| Name: Brian |
| Date: April 19, 2007 - 12:36 AM |
|
Comment: Hello, My name is Brian and was very impacted by your article i read,we too have a daughter who is very ill and suffers from xpd/ttd.She has all of the illnesses you mentioned in your article and some even not mentioned.We have been at childrens hospital in Milwaukee, WI. for over 2 months now with her.Her doctors say she may go home soon though.She was hospitalized for unknown bleeding in her intestines and low peotien.They tell us they still dont know where it came from.Do you know of any assistances there are out there because we lost our home and are now piled up with back bills so we could be by our baby, every place we try turns us down because she doesnt have the specific disease they cover.....so unfair.I was happy to hear of your sons age because the doctors here tell us our daughter does not have long to live.Its not easy to live with that agony but we try not to show it for her sake,but it is hard when you see what a happy child she is and that she will probably never truly enjoy some of the most beautiful things life has to offer.I would like to hear more from you and others and again please let me know of any help there is out there because right now we have none.Well thank you and i hope to hear from you soon and i have so much more to share about our daughter(Morgan) and maybe some of your doctors insights might help her. Thank You and God Bless Brian bornhofer@hotmail.com |
| Name: Julie Labouchardiere |
| Date: January 05, 2007 - 08:06 PM |
|
Comment: Well, it has been a long time since
I have spoken or seen you. I remember fondly teaching you your
colours,words,songs and laughing together in your room. You have grown and your
pictures are great! It is a delight to see your beautiful warm smile and that
your family has continued to be your shinning light. Thinking of you Julie |
| Name: Maria Guzzardi |
| Date: September 29, 2006 - 01:35 PM |
|
Comment: Hi Sammy-Joe, Miss you, keep smiling and making everyone happy. All our love Maria & Renato xo |
| Name: Sammyjoe Burns |
| Date: September 07, 2006 - 12:27 AM |
|
Comment: I was casually browsing the
internet when i typed in my name and this website came up (along with many
others). Im so touched by your son's story and wish him all the best. Hope he is well. xx |
| Name: David Mueller |
| Date: September 01, 2006 - 11:21 PM |
| Comment: Thanks so much. I teach DNA repair to medical students. I am using your site as an aid for them to understand Trichothiodystrophy. |
| Name: Melissa |
| Date: August 01, 2006 - 12:30 PM |
|
Comment: Hello, I came across your website recently while looking up information on Trichothiodystrophy after my nephew was dignosed with it (he's 9). I appreciate the way you have set up your website and after reading so much technical jargon, it was nice to have something real to read. I was reading and looking back on my nephew's earlier childhood and saw quite a few similarities already. Thanks you for sharing your information and life. |
| Name: Lina Ferlazzo |
| Date: July 27, 2006 - 05:12 PM |
| Comment: Hi Maria and family. I just stopped by your website as i haven't seen it for a while. I am sorry to read of Sammy-Joe's stroke. I hope he recovers from it soon. I just want to say to keep up the good work, you are doing a wonderful job looking after Sammy-Joe. Maria, you are in my prayers and i think of you often. Best wishes. Lina, Joe and family. |
| Name: iris meacham (psa at rch) |
| Date: July 05, 2006 - 09:16 PM |
|
Comment: Hi and love to you all, Joyce and i
just wanted to say hi. We hope you are all doing well. Miss you, Love from 5 east PSA's. |
| Name: anne (james mc's sister) |
| Date: June 13, 2006 - 03:24 PM |
|
Comment: wow i cant believe how much you've
grown. I've known you since i was in primary school and i just wanted to tell
you how much of a shining example you are, how you love life and of course the
wiggles. you have what it takes to overcome your trials and you do your best to
every day. i'm so very glad that i have the opportunity to know you.My family
and i are constantly praying for you and your wonderful family. We love you all, keep up the good work. sincerly, anne |
| Name: Brenda Klose |
| Date: June 09, 2006 - 10:27 AM |
| Comment: Hi Joe, i just wanted to say that your a very special person and its lovely to read about you and your family because now people will see the boy and his family and not just the illness. your an inspiration to us all. To your family - hugs and love to you all, stay strong and i wish you much laughter and happiness in the future |
| Name: Joe Liistro |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Hi Sammy, Did you think you were the only Joe Liistro? Keep smiling! |
| Name: maria iannetta (paola) |
| Date: April 30, 2006 - 06:07 PM |
| Comment: To Maria, Joe and Christian. Sammy Joe is the luckiest person in the world... he has you guys!!! Maria if I could put you on a pedastool, I would, and you know it. You are an AMAZING person, and there are so many reasons why I love you as my friend. I worship the ground you walk on for what you do for your children, family and yet you still have time for others. I take my hat off to you, and I know so many other people do too. (I have been telling you this for years, that NOBODY can do what YOU do, I mean it!) |
| Name: Maria Liistro |
| Date: April 30, 2006 - 06:07 PM |
| Comment: hello my gorgeous boy , I am amazed at how much you have grown in the last month , I KNOW the doctors in America are going to be excited to see how much you have grown and how much you have changed , you are and inspiration to us all , we love you very much , Christian said that when he grows up his three wishes are , one , that you are well and with him , two to be rich so he can save you and buy you things and three he wants to be an NBA player so he can dedicate his life career and every game to you !!! is he a beautiful brother , I have two gorgeous children and I am truelly amazed by them ,, I love you Sammy-Joe and Christian . |
| Name: susan stace |
| Date: April 30, 2006 - 06:07 PM |
| Comment: to Maria and her family i think Sammy Joe has done so well because he knows he comes from a loveing family hope you are feeling better soon with all my best for the future from Susan. |
| Name: joe L iistro |
| Date: April 30, 2006 - 06:07 PM |
| Comment: sammyjoe you are my life l will never give up on you and hope you will survive for a very long time.usa we are comeing,love your daddy sep |
| Name: Lena Capasso |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Hey Sammy-Joe. I've only just met your Mum and this is my first visit to your website. I'm going to read up on Trichothiodystrophy and everything that has been happening so far. Just want you to know you have another friend who's thinking about you and your family. I am a writer and I'm sure if we work together we can create a newspaper article that will prompt some action for you and for Trichothiodystrophy. I'll write again soon. In the meantime, keep shining. I've seen your photos...you make me smile, Sammy-Joe. Lena x PS Maria - I'll get back you as soon as I research the info about this condition, and all the events leading up to the present. Keep smiling sweeetie. x |
| Name: Kim Inturrisi |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Hi Maria, Sep, Christian and Sammy-Joe. Love you all. |
| Name: Danny & Terrie |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Love you all as i have always, grow tall and strong sammy-joe ... Love Danny & Terrie |
| Name: Maria Liistro |
| Date: April 30, 2006 - 06:07 PM |
| Comment: To my special survivor , you are an amazing young boy with lots of love to give and as long as I am alive I will continue to try and raise awareness on this illness that has trapped you in your life so many times and in so many ways . I know you are a survivor and as a survivors mum I owe it to those who have lost their loved ones to this illness to make sure that the world knows about this illness and what it can do to our beautiful children , I love you so much my precious boy love from your mum Maria |
| Name: joyce hoar |
| Date: April 30, 2006 - 06:07 PM |
| Comment: I am a quite ' angel- wings member 'glad to meet you. |
| Name: TERESA THWEATT |
| Date: April 30, 2006 - 06:07 PM |
| Comment: JUST WANTED TO SAY THAT YOU AND YOUR FAMILY WILL BE IN MY PRAYERS. I THINK THAT YOU ARE A WONDERFUL AND BRAVE BOY AND I REALLY DO HOPE THAT THEY CAN FIND A CURE FOR YOU OR THAT AT LEAST THEY CAN STOP THE PAIN. ONCE AGAIN, YOU WILL BE IN MY PRAYERS. |
| Name: Susan Krug |
| Date: April 30, 2006 - 06:07 PM |
| Comment: God Bless you Sammy-Joe! You are an inspiration! I will keep you in my prayers. Luv ya, Martiné |
| Name: Maria Liistro | ||
| Date: April 30, 2006 - 06:07 PM | ||
Comment:
|
| Name: Martin K Hartung |
| Date: April 30, 2006 - 06:07 PM |
| Comment: I would like to help if I could |
| Name: Sandi |
| Date: April 30, 2006 - 06:07 PM |
| Comment: I have checked out your caringbridge page and just checked this page out. I was able to find out so much more about Sammy-Joe from this. I hope he will have a wonderful day |
| Name: Kerry Elaina Hayes |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Hello there Sammyjoe! It looks like you keep everyone very busy! Maybe soon you and my son, Cole can play ? He is ten, I bet you two could be great buddies ! Stay sweet! Elaina ! |
| Name: Ana Wansink |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Sammy-Joe you are so brave. You are also very blessed to have the supportive parents that you have. I came accross this website by chance, and I feel so ignorant for not being aware of this condition. I have realised now how easy it can be to just plot along in life without knowing what others are faced with. It's so easy to take things for granted. I will keep you in my prayers. I pray that the right treatment will be available to you soon. By reading your story, it seems that you have so much love to give. It is a fortunate person who is loved by you Sammy-Joe. Much love, Ana. |
| Name: Blancato, Vince, Zio Anthony, Zia Rita, Frank, Pauline, Emily, Jordon |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Sammy Joe, What can we all say, you are a true inspiration to the entire family. We haven't known anyone so special like yourself and so determine to fight this. Your truly have the fighting spirit inside of you. Your parents are wonderful parent who would move heaven and earth for you, just to see a smile on your face. All our love your Uncle Tony, Aunty Ritam and your cousins Vince, Geraldine, Frank, Pauline, Emily and Jordon xxxooo |
| Name: denise mcquillan |
| Date: April 30, 2006 - 06:07 PM |
| Comment: my family is not on the internet the only chance i have to get on the net is when i am a school my mum and i try to find out as much as we can but it is hard because we cant seem to find anyone in new zealand with it so i decide i would try and talk to you about it to see how much information you have anout it. the doctors have known that katie has trichothiodystrophy for over seven years before they told my mum since they never diganosed here with any one syndrome we just calle dit katie syndrome intill doctor coffin laury came to new zealand and took some of katies here and he found out waht she had. katie has very frizzy hair and it breaks very easily she has never lost all of it but when some of her hair comes out its quite alot of it that does if you ever feel like contacting my mother who is called irene you can try my email adress we hope to get the internet very soon so you can have direct contact with her thank you and bye |
| Name: Melissa Hartung |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Hi Sammyjoe We signed your caring bridge site yesterday, your an amazing kid. We pray you can come to the USA again very soon, don't give up. |
| Name: emma Guy |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Sammy Joe I wish you all the best. I admire both you and your Mother |
| Name: Debbie and the Dreamteam |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Sammy Joe is in my prayers what a sweet little guy he is XOXOXO Love and prayers |
| Name: Lisa Wimberly |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Your beautiful family is blessed to have Sammy-Joe in your life. Continue to enjoy every moment of life. Embrace every second. My thoughts and prayers go out to Sammy-Joe and your family. May God bless you all. ((((HUGS)))) Lisa, Angel Chyanne's Nana |
| Name: Hillari |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Hi, I came to the site through the Raise Awareness board. I had never heard of this disease before and hope to learn more about it. I look forward to seeing updates as well for your beautiful son. Godd bless you. |
| Name: Luisa Antoniou |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Sammy Joe I wish you all the best. I admire both you and your Mother. I hope you get back to the States soon. My thought are with you. Smile and live life to your fullest!! |
| Name: Debbie and the Dreamteam |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Sammy Joe is in my prayers, what a brave young man he is. XOXOXO Love and prayers, |
| Name: Ruth Roda |
| Date: April 30, 2006 - 06:07 PM |
| Comment: God Bless you all, my heart and prayers go out to you. You have so much courage where it would be so easy to have none. Sammy-Joe, I admire you and I wish you all the blessings you deserve. |
| Name: Karin Gorton |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Thinking of you...God Bless |
| Name: Amy Hasson |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Sammy-Joe is such a wonderful, special little boy! He is very lucky to have such a caring and concerned mother. Even though we live so far away from each other and have never met in person, you are a great inspiration to me. Thanks for all your support and concern! Amy, Natalie and Lily's mom www3.caringbridge.org/tx/lily |
| Name: Julie Presley |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Sweet Sammy-Joe and Maria~ Your website is so beatiful. I am so grateful to you Maria for your friendship and support. I feel so lucky to have come across the support group. You are doing amazing things to bring attention to TTD. You truly are an unsung hero. I look foward to the day that we meet and I can give Sammy-Joe a BIG hug. Your family is in my prayers. Hugs, Julie (Collin and Regan's mom) |
| Name: Christine Davis |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Hi there I finally had time to read the info about Sammyjoe and anything I can do for you please just call me. If I can help I will if I cant then I will find someone who can help. Please let me know if the is anything we can do to help |
| Name: Cindy Cook |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Thank you for sharing this time in your life and making people like me appreciate what I have. I would like to say to all the family and friends, you will have a place in my heart, As my children grow I will teach them about this and many other disorders/diseases so they have a better understanding of not only the world around us but the people that a less fortunate than them, and help them understand life is to short to be taken for granted. |
| Name: mandy barnes |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Hi my name is Mandy and both of my sons have the same condition as your son , as strange as this may seem you are the only person i have found who has a child with the same condition . My eldest son was found to have this when he was about two. He was rather poorly while i was pregnant with him and was very poorly when his was first born, he had dry skin that flaked off weighed 4lb 14oz and had know hair .Doctors thought that it was because he was born 4 weeks early and he come home when he was about 3 months old.he was then doing fine until he was one and a half when he caught an infection on the lining of the brain he was in hospital for some time he had many seizures and stopped breathing this is when he was moved to great ormond street hospital. When he continued to have seizures great ormond street diagnosed him with Trichothiodystrophy . There is not much this hospital can tell us about this condition as they do not know much about it. My son has white brittle hair ,dry skin,epilepsy, and learning difficulties, he is 9 years old. My other son has white brittle hair,dry skin , brittle nails and what seems to be some learning difficulties ,also both have no eyebrows . my daughter on the other hand does not have this condition and is perfectely healthy. Your son seems to be a right fighter and must be a treasure to you as are all of my children to me. i hope to hear from you soon as it will be nice for me and my husband to have somebody to talk to about this. i wish you all the very best . mandy |
| Name: Sent: 19/11 08:13 |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Hi Sammy Joe, > > I read mums story in the notice board magazine, and I must say how happy I > was to hear of your fantastic achievment in winning your first gold medal, > Well Done. > > Your very lucky to have the love and support of your obvioulsy wonderful > family. > > You keep running Sammy Joe and never loose sight of your dreams, your a > true inspiration, you have definetley moved me. > > > Best wihes to you and your family always, > > Sandra > Sandra Licciardo > Aids and Equipment Program > Ph; 9345 6894 > Hi Sammy Joe, > > I read mums story in the notice board magazine, and I must say how happy I > was to hear of your fantastic achievment in winning your first gold medal, > Well Done. > > Your very lucky to have the love and support of your obvioulsy wonderful > family. > > You keep running Sammy Joe and never loose sight of your dreams, your a > true inspiration, you have definetley moved me. > > > Best wihes to you and your family always, > > Sandra > Sandra Licciardo > Aids and Equipment Program > Ph; 9345 6894 |
| Name: Brenda Stites |
| Date: April 30, 2006 - 06:07 PM |
| Comment: God sent a special little angel, Sammy-Joe, to a mother who was just right. Thanks for sharing your love to the world! |
| Name: Sheila |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Sammy-Joe all the way from across the world you have touched my "heart". I just want you to know that you are in our thoughts and prayers EVERY DAY! MAY GOD BLESS YOU! |
| Name: Nancy Campisi |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Hope you are still going well and smiling. What a wonderful boy and you are a fantastic mother. |
| Name: Ellena Simola |
| Date: April 30, 2006 - 06:07 PM |
|
Comment: Hi Maria, Joe(Mosca) & Family, This is Ellena you remember Tony Simola that worked with you. I have just discovered your website and often wonder how your beautiful son is going. He has grown into a lovely young man. I hope that things are going well for you and all the family. I would love to hear back from you if you have a chance to respond. I often think back to those fun times that we all had together when we were younger. Take care and keep on being strong as you always have been. Love Ellena Simolaxxxxxxxxxx |
| Name: Ken Green |
| Date: April 30, 2006 - 06:07 PM |
|
Comment: Hi maria and Sammy Joe, Hoe are you? This is Dr Delicoius.My daughter found my name on your website. Thank you for the nice things that you said about me.I really appreciate that. Can I help you with more product? Ken Green |
| Name: nathan |
| Date: April 30, 2006 - 06:07 PM |
| Comment: hi sammy-joe and maria how are ya doing buddy? i just want ya to no that theres a family here thinking of you and praying for you all day everyday we all have faith in you dont forget it dude hang in there |
| Name: Stef, Stefan 'N' Max |
| Date: April 30, 2006 - 06:07 PM |
|
Comment: Hope that you can overcome this
illness. So please get well. |
| Name: Angela Caciolo |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Hello Sammy-Joe, Maria, Joe and Christian, hope you are all well, always thinking of you....Angela Caciolo and family. |
| Name: Bronwyn Hinz |
| Date: April 30, 2006 - 06:07 PM |
| Comment: My warmest wishes to Sammy Joe, Maria, Joe and Christian. Your dedication, courage and love for each other is inspirational, and I pray that things look up for Sammy Joe and all of you. |
| Name: Corinne Paulson |
| Date: April 30, 2006 - 06:07 PM |
|
Comment: Hi Maria. Give my best to Sammy
Joe. I'm part of the XP Connection group and I think we have exchanged emails
there before. Keep fighting for your son; you are an inspiration to me to fight
for my kids. Corinne |
| Name: Maria Liistro |
| Date: April 30, 2006 - 06:07 PM |
|
Comment: Dear Fatima , I am not sure why the
emails are bouncing back ? Miss you heaps its been a year since we met
,,remember The National Institute of Health with Dr Kraemer ,,I sure miss you Maria |
| Name: perez@99main.com |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Dear Maria, how are you doing? I have sent you severals messages but they have been returned back to me. Please write to me as soon as you can. Love, Fatima |
| Name: Luke Powell | ||
| Date: April 30, 2006 - 06:07 PM | ||
Comment:
|
| Name: Claire Tomassini |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Hi. I have a son, Matthew who is 14 yrs old w/ TTD. He was diagnosed when he was approx 2 yrs old. We are now in a protocal for Trichothiodystrophy at the NIH. Like Sammyjoe, Matthew is a very happy child, with a smile always on his face. |
| Name: Jeni burnside |
| Date: April 30, 2006 - 06:07 PM |
| Comment: We met at the NIH last year. I just got back from my regular visit and i thought about you. I hope Sammy Joe and you are doing allright. I would love to hear from you. |
| Name: mike weeks |
| Date: April 30, 2006 - 06:07 PM |
| Comment: semper fi sammy that is latin for always faithful dont give up |
| Name: Dave |
| Date: April 30, 2006 - 06:07 PM |
| Comment: fight the fight sammy keep your chin up and look thge world back in its eyes good luck for the future |
| Name: daniel fabris |
| Date: April 30, 2006 - 06:07 PM |
| Comment: thanx maria for letting me talk to my class about the support nework you have and a little bit about sammy joe |
| Name: Trevor Armitage |
| Date: April 30, 2006 - 06:07 PM |
| Comment: All my best wishes and prayers go out to you Sammy-Joe, may you live your life to the fullest and god will take care of you. Miricles can happen. |
| Name: Jerome Longo |
| Date: April 30, 2006 - 06:07 PM |
| Comment: My Little cousin Sammy-Joe hope u live life to the fullest you are an inspiration to us all , I love you and your brother and family very much and I will always hold perfect memories of u in my heart and soul ,,go the Bombers !! |
| Name: Junaid Munshi |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Hi Sammy You are a wonderful young man!! And U know what u have a wonderful and a caring family.And I am with you always............keep good and enjoy life to the fullest |
| Name: Clint |
| Date: April 30, 2006 - 06:07 PM |
| Comment: I hope that God to be on your side.I wish the very best for you and your family. |
| Name: Kara Gmlin |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Sammy-Jo... you are truly God's miracle. May you continue to be blessed. My prayer is for you and your family. :) |
| Name: Ayo |
| Date: April 30, 2006 - 06:07 PM |
|
Comment: hello Sammy-Joe. How are you? Just
wanted to say hello to you. i am very sure you will be fine. God loves you and
will heal you. i will pray for you. bye |
| Name: Frank |
| Date: April 30, 2006 - 06:07 PM |
| Comment: hi sam,i pray to god tht all ur dream come true,alway's smile dear,be happy |
| Name: Tyler Hutchings |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Hey sam, what's going on man. I'm just sitting here in Boise trying to keep all the girls away from your picture. What's been up with you? By the way, i'm 16. Well, stay cool and keep your mom in line. I'll talk to you later. Write me back bro. |
| Name: Sarah Mauriks |
| Date: April 30, 2006 - 06:07 PM |
|
Comment: dear Maria, your email was lovely and very moving. you now have my private email address, so keep me updated on things and let me know whenyou need volunteers for the tins! take care, kind regards: Sarah |
| Name: Ridley Family |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Hi Sammy-joe, It's wonderful you are feeling better, keep up your strenth and zest for life matey..Maria you are an amazing person. Our thoughts are with the whole family |
| Name: Sean Appel |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Both of my daughters, age 4 1/2 yrs and 3 yrs were diagnosed with Trychothiodystrophy 3 days ago. After 4 yrs of tests a dermatologist report tipped off our doctors to test a hair sample on both girls. It was positive. I iwsh you all the best and my wife and I will keep in touch. |
| Name: Jim Olson |
| Date: April 30, 2006 - 06:07 PM |
|
Comment: Sammie-joe, Hey bud hang in there. You will be in my thoughts and prayers. Good luck to you and your family. Take care, Jim. |
| Name: Vik Ramji |
| Date: April 30, 2006 - 06:07 PM |
|
Comment: God bless and stay strong in faith.
My prayers are with you. Vik Ramji reg #45209 Royal Canadian Mounted Police Langley,BC |
| Name: eddie |
| Date: April 30, 2006 - 06:07 PM |
|
Comment: Sammy, hows it goin wee man, not
only are you unbelievably brave, but your ma and da and the rest of your family
are too, which is why no matter what you do in life, you will always be a great
man, to be a man doesnt mean to get over the age of 18, it means courage, love
for your fellowman, fighting against the odds and having a say, some sort of
significance, and you sammy have acheived that, i'm sure your parents will
understand this when i say iy it, thanks to people like them you will be here
fighting on in their memory, strength and honour sammy-joe eddie, |
| Name: sam |
| Date: April 30, 2006 - 06:07 PM |
|
Comment: Hey I hope you get better soon.All
best wishes to all. All will be well.Samxx |
| Name: Este |
| Date: April 30, 2006 - 06:07 PM |
|
Comment: Sammy-joe, be strong and put all
ure hurt and pain in God's hands, He brought u this far, just think how furhter
He can bring u still!! GOD LOVES U. To Maree, we chatted today on christian chat here at yahoo, and i know u are a strong woman whose heart is filled with love. Just keep on praying and believing and God will surely do the rest. |
| Name: Susan Krug |
| Date: April 30, 2006 - 06:07 PM |
|
Comment: Hello, Please let me know how Sammy Joe is doing. I also had a child with trichothiodystrophy. He passed away at 18 months. I believe his death was due to hospital neglete. It is still hard for me to talk about. I am very interested in how old Sammy Joe is and how he is doing. Please write me back. |
| Name: magali |
| Date: April 30, 2006 - 06:07 PM |
| Comment: Sammy-joe I hope the best for you and your family. It was interesting to come across this web site. |
| Name: NADIA ZAPPONE |
| Date: April 30, 2006 - 06:07 PM |
|
Comment: HI SAMMY JOE, I WISH YOU ALL THE BEST. THIS IS A VERY INFORMATIVE SITE |
| Name: Jason Van Wieringen |
| Comment: All the Best and don't ever give up! |
| Name: Saks |
|
Comment: BLESSING & LOVE FOR SAMMY-JOE.HE'S
INDEED A BRAVE BOY & I'M SURE HE'LL BE FIT & FINE SOON.I'LL PRAY FOR HIS
RECOVERY.GOD BLESS. ps:MIKE, PLZ DO NOT USE HARSH WORDS FOR A LITTLE BOY, U NEVER KNOW THE NEXT TURN TO BE TESTED MIGHT BE YOURS.IF U CAN'T BE KIND IT'S OK, BUT ATLEAST DO NOT BE CRUEL. |
| Name: kev lown (Homepage) | |
| Country: england | Date: Wed Jun 25 13:16:42 2003 |
|
Comment: i dont know how 2 say how amazing you truly are
you no the true meaning of love | |
| Name: sonia williams (Homepage) | |
| Country: australia | Date: Wed Jun 25 01:47:09 2003 |
| Comment: dear sammy joe From the bottom of my heart we wish you all the happiness and joy in the world as i could imagine the pain that comes your way as my brother is autistic and suffers as well. | |
| Name: clint pline (Homepage) | |
| Country: United States | Date: Mon Jun 23 15:00:52 2003 |
| Comment: Enjoy your animals and have lots and lots of fun.enjoy life to the fullest.always smile.the world will be a better place if it was filled with smiles.Take care....... | |
| Name: jeff (Homepage) | |
| Country: usa | Date: Fri Jun 20 16:12:58 2003 |
| Comment: good luck...nice site | |
| Name: David (Homepage) | |
| Country: USA | Date: Fri Jun 20 09:04:29 2003 |
|
Comment: hey sammie-joe, sorry that first one was for u, but here it is again: i hope you enjoy your time on earth, and cherise it with the ones that truley love u, as we hold u in our hearts, prays, and minds, that you will continue to live a good life, and make sure that pretty mother of urs keeps u in gear!
love u all from both of us.. david and baby jillian leah | |
| Name: David (Homepage) | |
| Country: u.s.a | Date: Fri Jun 20 09:00:01 2003 |
|
Comment: Hey christian, I know your probably as sweet, honest, great, and cute like your mother, we pray for u, and hope that your days will be happy, long and enjoyful, we hope you cherise every moment u have living on this earth, for it should be a great one...
much love from us both, david & baby jillian | |
| Name: wendell garrett (Homepage) | |
| Country: usa | Date: Wed Jun 18 04:56:40 2003 |
| Comment: hello Sammie Joe. My name is Wendell and I want you to know that my thoughts and prayers are with you. good luck and God bless. | |
| Name: Mark (Homepage) | |
| Country: USA | Date: Tue Jun 17 12:39:06 2003 |
| Comment: God Bless you Sammy-Joe | |
| Name: JIM KECK (Homepage) | |
| Country: USA | Date: Tue Jun 17 03:17:52 2003 |
| Comment: THINKING OF YOU IN MY HEART YOUNG MAN ,,, YOU SHOULD BE ONE GOOD DUDE.CAUSE YOU HAVE ONE STRONG MOTHER | |
| Name: Gavin Wilkes (Homepage) | |
| Country: USA | Date: Tue Jun 17 01:25:36 2003 |
| Comment: A very touching tribute. I am sure with all that science and technology has to offer these days, some progress will be found. Keep your chin up, looking at the sky. | |
| Name: J. Clark (Homepage) | |
| Country: USA | Date: Mon Jun 16 08:10:22 2003 |
| Comment: I can't imagine what it would be like as a parent to deal with issues of this nature, but I do know what it was like to deal with a critical illness as a dear friend of mine battled CF for the last 10 years of her wonderful life. It is a never-ending battle for all those involved. Hang in there and never lose your hope and faith. | |
| Name: Melissa Conte (Homepage) | |
| Country: Australia | Date: Mon Jun 16 08:04:48 2003 |
|
Comment: To the Liistro Family
I was at the fund raise on saturday the 14/06/03 that you had with family and friends. Thank you for allowing me to come and help Sammy-Joe. Both Maria and Joe's speaches were very touching. I admire your strength and courage no one knows what it feels like to be in your situattion. | |
| Name: DJ (Homepage) | |
| Country: USA | Date: Fri Jun 13 18:47:41 2003 |
|
Comment: Hi
Thanks for sharing your website. I wish you and your family the best for Sammy-Joe. As a parent I know how you feel about your children. I don't live with mine but I will always love and care for them. Best of luck in the future and thanks for sharing your website. DJ | |
| Name: simone cordiano (Homepage) | |
| Country: Australia | Date: Fri Jun 13 03:49:40 2003 |
| Comment: I am a friend of Maria's. I have had the pleasure of meeting Sammy-Joe. He is a special, sweet and peaceful boy & I believe it has a lot to do with Maria. Hope a cure is found | |
| Name: Brooke Parsons (Homepage) | |
| Country: | Date: Mon Jun 9 14:03:10 2003 |
|
Comment: To an unsung hero,
Thanks for all that you have taught me, you are an absolute delight. For being my friend, my teacher I thank you. No words could ever express what you mean to me, I look up to you and I always will. Love you lots..... | |
| Name: Elle (Homepage) | |
| Country: Australia | Date: Thu Jun 5 08:34:20 2003 |
| Comment: All the best, Stay strong and happy. | |
| Name: Susan Peucker (Homepage) | |
| Country: Australia | Date: Wed Jun 4 08:42:31 2003 |
| Comment: A big hello from everyone at the Ballarat Goldfields Holiday Park. Truly an inspirational story of a very loving family. | |
| Name: penny (Homepage) | |
| Country: australia | Date: Mon Jun 2 06:35:48 2003 |
|
Comment: Your story is amazing and inspirational. Sammy-Joe is blessed to have such a supportive family.
Good luck and all the best with the research of his condition. | |
| Name: Cindy (Homepage) | |
| Country: Australia | Date: Sat May 31 02:26:20 2003 |
| Comment: I hope that a cure can be found one day for this disease. | |
| Name: Michael & Tina (Homepage) | |
| Country: Australia | Date: Tue May 27 13:13:22 2003 |
| Comment: Maria & Joe, keep up the good work, you've been an inspiration to many. The courageous journey has transformed the pain of uncertainty into hope for life to Sammyjoe and others like him. The road toward a cure is looming ahead and you are on it. Best wishes and God bless. | |
| Name: Dina Antoniou (Homepage) | |
| Country: Australia | Date: Tue May 27 05:13:59 2003 |
| Comment: | |
| Name: K Van den Bossche (Homepage) | |
| Country: Australia | Date: Tue May 27 03:18:02 2003 |
| Comment: | |
| Name: Luisa Sterich (Homepage) | |
| Country: Australia | Date: Tue May 27 01:16:02 2003 |
| Comment: I met Sammy-Joe once when accompanying a friend who was visiting his mother. When reading her testamonial I was thinking yes that is all true about Sammy-Joe but words truly are not enough to explain his wonderful personality, happiness and passion that Maria discribed. It's like the common cliche 'you have to see it to believe it'. What can I say not even I a grown adult could cope the way he does. Please help Sammy-Joe and other with his condition. God Bless. Luisaxx | |
| Name: Jason Marchildon (Homepage) | |
| Country: Canada | Date: Sat May 24 19:46:54 2003 |
| Comment: Wishing all the best to you and your family. | |
| Name: Barbara (Homepage) | |
| Country: Aust | Date: Sat May 24 04:10:15 2003 |
| Comment: To Sammy-Joe and family, best wishes. I hope it is easier now that winter is on its way... | |
| Name: R.Guijarro (Homepage) | |
| Country: Australia | Date: Fri May 23 02:49:46 2003 |
| Comment: Keep going for it Sammy-Joe . | |
| Name: Josette VargA (Homepage) | |
| Country: Australia | Date: Fri May 23 01:38:58 2003 |
| Comment: | |
| Name: Assunta Bux (Homepage) | |
| Country: Aust | Date: Fri May 23 01:04:25 2003 |
| Comment: Wishing you all the best. | |
| Name: Natalie Alcazar-Carlus (Homepage) | |
| Country: Australia | Date: Thu May 22 11:16:42 2003 |
| Comment: All the best Sammy-Joe! | |
| Name: Virginia Alcazar (Homepage) | |
| Country: Australia | Date: Thu May 22 07:32:12 2003 |
| Comment: | |
| Name: Frank Carlus (Homepage) | |
| Country: Australia | Date: Thu May 22 03:08:51 2003 |
| Comment: A sad story. I hope you find some solution soon. | |
| Name: Laura Alcazar-Carlus (Homepage) | |
| Country: Australia | Date: Wed May 21 11:18:53 2003 |
|
Comment: Hello Maria (Carmen's friend)
The letters that you have written brought tears to my face. You, Giuseppe, Sammy Joe and Christian are all very luck to have each other!!Good Luck and see you soon. XXXXXXX :-) | |
| Name: Sharon Cassidy (Homepage) | |
| Country: Australia | Date: Wed May 21 05:30:16 2003 |
| Comment: What amazing strength and courage. A fantastic family journey and I wish all of Sammy Joe's family well. | |
| Name: Faye Sakaris (Homepage) | |
| Country: Australia | Date: Wed May 21 01:43:43 2003 |
|
Comment: Hi,
My name is Faye and I'm a work friend of Carmen Cappello. I wish you all the best with your son's future, wouldn't it be fantastic if there was a cure for his condition? Keep up the good work, I admire your positive outlook and committment to providing the best for Sammy Jo. | |
| Name: scott banks (Homepage) | |
| Country: australia | Date: Tue May 20 13:48:22 2003 |
| Comment: | |
| Name: Vanessa Hatzindinas (Homepage) | |
| Country: Australia | Date: Tue May 20 08:14:09 2003 |
| Comment: I wish you lots of love, luck and happiness. | |
| Name: Rebecca Houghton (Homepage) | |
| Country: Australia | Date: Tue May 20 03:12:14 2003 |
| Comment: | |
| Name: Natalie Stephens (Homepage) | |
| Country: Australia | Date: Tue May 20 00:27:13 2003 |
| Comment: What a wonderful account of your lives. I wish you well in your persuit of treatment and answers. | |
| Name: Betsy (Homepage) | |
| Country: USA | Date: Mon May 19 14:33:41 2003 |
| Comment: Wishing you and your family the best. | |
| Name: Marie Sullivan (Homepage) | |
| Country: Australia | Date: Mon May 19 12:22:36 2003 |
| Comment: I heard about you tthrough Carmen Capello who speaks very highly and passionately about you all. I find it amazing that you show such strength through all this uncertantly. You are a very inspiring family and I wish you all the best in everything life has to offer | |
| Name: maggie wollen-olson (Homepage) | |
| Country: USA | Date: Mon May 19 04:05:39 2003 |
| Comment: Have you ever heard of PHP, for kids with special needs due to congenital physical and mental disabilities ?-- you might want to contact them to find parents/families with kids with same condition --- very big, well known organization here in California. www.php.com | |
| Name: Shelley (Homepage) | |
| Country: Australia | Date: Mon May 19 02:29:36 2003 |
| Comment: Best Luck to you and yours from me and mine! | |
| Name: Mary (Homepage) | |
| Country: Australia | Date: Sun May 18 23:28:33 2003 |
| Comment: | |
| Name: J Bartee (Homepage) | |
| Country: USA | Date: Sat May 17 19:55:11 2003 |
| Comment: Thank you for sharing your memories and this information with all of us. | |
| Name: Saskia (Homepage) | |
| Country: Japan | Date: Sat May 17 13:21:37 2003 |
| Comment: Amazing boy and a wonderful family. | |
| Name: Kath (Homepage) | |
| Country: Australia | Date: Sat May 17 08:35:50 2003 |
|
Comment: Sammy-Joe, to a brave young boy, hope all your dreams come true!!
XXXXX | |
| Name: Mark (Homepage) | |
| Country: Australia | Date: Wed May 14 01:17:00 2003 |
| Comment: Good luck! It's great to hear Sammy-Joe has so much passion for his life. | |
| Name: Kathryn McKimmie (Homepage) | |
| Country: Australia | Date: Wed May 14 00:23:25 2003 |
| Comment: Hi Maria & Family. I'm a friend of Chris Sheather & met you a couple of years ago. Chris has kept me informed with how things are going for Sammyjoe. I received your email from Chris & have sent it on to heaps of family & friends as I know that every little bit helps you all. | |
| Name: Angel DeWaard (Homepage) | |
| Country: USA | Date: Tue May 13 19:18:26 2003 |
| Comment: We have an 18 year old who was diagnosed with Cockayne Syndrome when she was 15 years old, but attended a retreat this weekend where the doctor who was a guest speaker said she believe our daughter may also have TTD. We are now in the investigative stage. | |
| Name: Dani Snyders (Homepage) | |
| Country: England | Date: Tue May 13 13:14:06 2003 |
| Comment: I wish you all the luck in the world in your hunt for a cure. | |
| Name: Hayley Scott (Homepage) | |
| Country: London | Date: Tue May 13 10:08:23 2003 |
| Comment: May the road rise up to meet you and may the sunshine always be on your face..... | |
| Name: s.bonney (Homepage) | |
| Country: canada | Date: Mon May 12 23:44:30 2003 |
| Comment: my cousins son has TTD. I hope they find a cure | |
| Name: Greg Weeks (Homepage) | |
| Country: Canada | Date: Mon May 12 21:46:05 2003 |
| Comment: | |
| Name: Tanya (Homepage) | |
| Country: Canada | Date: Sun May 11 21:36:11 2003 |
| Comment: Good luck with you son, and I hope that they find treatment or a cure soon. | |
| Name: Jaye (Homepage) | |
| Country: Canada | Date: Sun May 11 20:24:27 2003 |
| Comment: good luck with everything. | |
| Name: Rich (Homepage) | |
| Country: Canada | Date: Sun May 11 20:20:10 2003 |
| Comment: May you live your life to the fullest extent, what ever dreams you may have come true! | |
| Name: Heather (Homepage) | |
| Country: USA | Date: Sun May 11 04:11:46 2003 |
| Comment: What a brave person you must be, may you enjoy every precious moment, and god bless you. | |
| Name: Catherine (Homepage) | |
| Country: Canada | Date: Fri May 9 06:04:44 2003 |
| Comment: your child and everyone like him are in my thoughts and prayers. | |
| Name: Catherine (Homepage) | |
| Country: Canada | Date: Fri May 9 06:04:44 2003 |
| Comment: your child and everyone like him are in my thoughts and prayers. | |
| Name: Sue Silcox (Homepage) | |
| Country: Canada | Date: Fri May 9 04:37:47 2003 |
|
Comment: This is a heartbreaking disease/disorder. You are courageous and inspiring...you also put things into perspective for everyday living...
God Bless, Sue Silcox | |
| Name: Kirsty Pontifex (Homepage) | |
| Country: Australia | Date: Fri May 9 04:14:31 2003 |
| Comment: Hi Maria, I saw Sammy-Joe on the front of Notice Board March and saw your web address. You've been busy! Keep battling on, you're a wonder! It was great to bump into you at RCH a while back. Keep in touch. Love Kirsty. | |
| Name: tracy (Homepage) | |
| Country: canada | Date: Fri May 9 04:04:44 2003 |
| Comment: my thoughts are with you and your family. hope they find a cure soon. | |
| Name: Pieter (Homepage) | |
| Country: England | Date: Thu May 8 18:25:25 2003 |
| Comment: | |
| Name: Shannon (Homepage) | |
| Country: Canada | Date: Thu May 8 17:49:51 2003 |
| Comment: Good luck with your son! | |
| Name: Sean Lavin (Homepage) | |
| Country: Canada | Date: Thu May 8 16:54:35 2003 |
| Comment: I hope they can find a cure or treatment to help this disorder as soon as possible. We all take for granted the benefits of living a normal life without a disorder or defect. | |
| Name: John Gannon (Homepage) | |
| Country: Canada | Date: Thu May 8 14:32:48 2003 |
| Comment: Good cause!! Best of luck | |
| Name: Matt Partridge (Homepage) | |
| Country: England | Date: Thu May 8 11:36:49 2003 |
| Comment: | |
| Name: Katharina Wuestner (Homepage) | |
| Country: United Kingdom | Date: Thu May 8 10:28:44 2003 |
| Comment: All the best for you Sammy-Joe! | |
| Name: Stephen Fullan (Homepage) | |
| Country: France | Date: Wed May 7 23:52:37 2003 |
| Comment: | |
| Name: Kristin Braun (Homepage) | |
| Country: UK | Date: Wed May 7 23:45:31 2003 |
| Comment: Best wishes to Sammy-Joe and your family. | |
| Name: chris macleod (Homepage) | |
| Country: canada | Date: Wed May 7 22:49:07 2003 |
| Comment: | |
| Name: Patty King (Homepage) | |
| Country: united states | Date: Wed May 7 19:06:46 2003 |
| Comment: I hope your son gets better really soon!! | |
| Name: Mike Bowman (Homepage) | |
| Country: Canada | Date: Wed May 7 02:40:35 2003 |
| Comment: All the best. | |
| Name: Shelley Hofer (Homepage) | |
| Country: Canada | Date: Tue May 6 14:43:13 2003 |
| Comment: I wish you and all your loved ones the very best. It's hard when it takes hardships to teach us the most important things in life - but I think your family has done just that. If the world only knew how precious time and love was... | |
| Name: NADIA ZAPPONE (Homepage) | |
| Country: AUSTRALIA | Date: Tue May 6 06:36:14 2003 |
|
Comment: HI SAMMY JOE,
I WISH YOU ALL THE BEST. THIS IS A VERY INFORMATIVE SITE. | |
| Name: Chloe Porter (Homepage) | |
| Country: usa | Date: Tue May 6 02:50:23 2003 |
|
Comment: i hope this helps
| |
| Name: Kate (Homepage) | |
| Country: Canada | Date: Tue May 6 00:52:13 2003 |
| Comment: We also know Jake from Canada, who has TTD. He is indeed a wonderful little boy. I can see from your pitcures that Sammy-Joe is a bright and happy little boy. I know that it can be lonely at times since this condition is so rare, but please know that people around the world are sending their best wishes to you all. | |
| Name: Jason Van Wieringen (Homepage) | |
| Country: Canada | Date: Tue May 6 00:50:56 2003 |
| Comment: All the Best and don't ever give up! | |
| Name: Saks (Homepage) | |
| Country: India, mumbai | Date: Mon May 5 22:44:21 2003 |
|
Comment: BLESSING & LOVE FOR SAMMY-JOE.HE'S INDEED A BRAVE BOY & I'M SURE HE'LL BE FIT & FINE SOON.I'LL PRAY FOR HIS RECOVERY.GOD BLESS.
ps:MIKE, PLZ DO NOT USE HARSH WORDS FOR A LITTLE BOY, U NEVER KNOW THE NEXT TURN TO BE TESTED MIGHT BE YOURS.IF U CAN'T BE KIND IT'S OK, BUT ATLEAST DO NOT BE CRUEL. | |
| Name: Anita (Homepage) | |
| Country: Dubai | Date: Mon May 5 22:34:41 2003 |
| Comment: why fear when God is here...be positive. | |
| Name: Sakshi (Homepage) | |
| Country: Dubai, UAE | Date: Mon May 5 22:31:54 2003 |
| Comment: GOD BLESS THE CHILD & GRANT HIM WITH A LONG & A PEACEFUL LIFE FULL OF HAPPINESS | |
| Name: Jo-Anne Osborne (Homepage) | |
| Country: Canada | Date: Mon May 5 22:08:45 2003 |
| Comment: We have a grandson who will be 3 in September who has Sammy-Joe's disorder. We love him dearly and appreciate all your comments. Jake has some and different aspects of the disorder. Thank you for sharing your life and Sammy-Joe's. He is an inspiration to those of us who have a little one that is much younger. They certainly have a zest for life that alot of us find very hard to grasp sometimes. God bless your son. Sincerely, Jo-Anne. | |
| Name: Brian Hines (Homepage) | |
| Country: Canada | Date: Mon May 5 21:49:57 2003 |
| Comment: | |
| Name: Heather Caldwell (Homepage) | |
| Country: Canada | Date: Mon May 5 20:46:42 2003 |
| Comment: With hope and support I wish you all the best in overcoming this challenge that life has put before you. You've learned to live for today which tells me that you're already winning. My prayers go out ot you. | |
| Name: Marcy (Homepage) | |
| Country: canada | Date: Mon May 5 20:42:48 2003 |
| Comment: | |
| Name: Arlene Arch-Wilson (Homepage) | |
| Country: Canada | Date: Mon May 5 20:37:24 2003 |
| Comment: How courageous you all are! My thoughts and prayers are with you. | |
| Name: diana macleod (Homepage) | |
| Country: CANADA | Date: Mon May 5 20:33:50 2003 |
| Comment: HOPE THAT A CURE CAN BE FOUND | |
| Name: Laura Lincoln (Homepage) | |
| Country: USA | Date: Mon May 5 18:49:42 2003 |
| Comment: | |
| Name: Richard (Homepage) | |
| Country: CANADA | Date: Mon May 5 18:27:05 2003 |
| Comment: How can anyone be so hateful, so ignorant to say such spiteful things? I know pf the family and all I can say: 'Hell hath no fury like a 'Mike' scorned'! How can you live with yourself and look at yourself in the mirror? God forgive you, Mike! If you have the decency, leave us your contact so we can confront you! For SHAME!!! For my part, I shall continue to pray for the child! | |
| Name: Shari Freeman (Homepage) | |
| Country: USA | Date: Mon May 5 18:00:19 2003 |
| Comment: | |
| Name: MPSJR (Homepage) | |
| Country: USA | Date: Mon May 5 16:49:44 2003 |
| Comment: Due to the fact that someone thinks it is funny making someone elses pain a joke. Please do not leave messages on this site that are not true. There is alittle boy in need of help and support. He is a funny and bright young man. So Please dont leave messages of hate,distrust or any thing that could hurt his feelings or those that love him. | |
| Name: Fireman Mike (Homepage) | |
| Country: USA | Date: Mon May 5 16:29:06 2003 |
|
Comment: To whom it may concern please do not leave sad, mad,
or hatefull meassages in the guest book. This is a happy book. Great website and keep up the good work. The Fire Guys of LA Junta | |
| Name: alison Bacall (Homepage) | |
| Country: UK | Date: Mon May 5 13:48:12 2003 |
| Comment: With all best wishes. | |
| Name: Angelo Siracusa (Homepage) | |
| Country: Australia | Date: Mon May 5 12:46:11 2003 |
| Comment: I wish you the very best | |
| Name: Bettina Kaplan (Homepage) | |
| Country: Australia | Date: Mon May 5 09:13:17 2003 |
| Comment: Good luck finding other families and maybe even a cure! | |
| Name: mary (Homepage) | |
| Country: uas | Date: Mon May 5 03:46:08 2003 |
| Comment: bestwishes | |
| Name: William Stewart (Homepage) | |
| Country: usa | Date: Mon May 5 03:28:31 2003 |
|
Comment: UH HI
Just doing this for a good cause (i hope) | |
| Name: seth gilistro (Homepage) | |
| Country: U.S | Date: Sun May 4 18:36:34 2003 |
| Comment: HOPE ALL IS WELL | |
| Name: Bobby Burns (Homepage) | |
| Country: | Date: Sun May 4 18:34:35 2003 |
| Comment: Good luck | |
| Name: joe b (Homepage) | |
| Country: usa | Date: Sun May 4 18:33:28 2003 |
| Comment: hi | |
| Name: Timo (Homepage) | |
| Country: Usa | Date: Sun May 4 18:31:59 2003 |
| Comment: Well i hope this 23 cents help you in anyway. Get better | |
| Name: Sue Ellen Chacon Hidalgo (Homepage) | |
| Country: USA | Date: Sun May 4 18:20:51 2003 |
| Comment: Hey this is Sue Ellen. I just wanted to let you know that you are in my prayers. Please remember that everything happens for a reason, and that God loves you and will take care of you all. You are in my thoughts and I send angels with you to bring comfort and strenght, patience and happiness in your family. God bless you and take care, and never give up in life. | |
| Name: Elizebeth (Homepage) | |
| Country: ca, usa | Date: Sun May 4 13:54:17 2003 |
| Comment: | |
| Name: Ann (Homepage) | |
| Country: Ge | Date: Sun May 4 13:44:11 2003 |
| Comment: HOPE THE KID WILL FINE SOON! | |
| Name: Taylor (Homepage) | |
| Country: aus | Date: Sun May 4 13:13:54 2003 |
| Comment: god bless | |
| Name: Taylor (Homepage) | |
| Country: Aus | Date: Sun May 4 13:09:55 2003 |
| Comment: GOD BLESS YOU | |
| Name: Brodie (Homepage) | |
| Country: aus | Date: Sun May 4 13:08:50 2003 |
| Comment: Our prays are with you all | |
| Name: Monique (Homepage) | |
| Country: Australia | Date: Sun May 4 13:07:30 2003 |
| Comment: All the best | |
| Name: Monique (Homepage) | |
| Country: Australia | Date: Sun May 4 13:07:30 2003 |
| Comment: All the best | |
| Name: Ben (Homepage) | |
| Country: Australia | Date: Sun May 4 13:06:17 2003 |
| Comment: best wishes | |
| Name: Nasir (Homepage) | |
| Country: pk | Date: Sun May 4 13:06:12 2003 |
| Comment: | |
| Name: MARIA (Homepage) | |
| Country: AUSTRALIA | Date: Sun May 4 13:04:36 2003 |
| Comment: GOOD LUCK WITH ALL YOU DO | |
| Name: Natalee (Homepage) | |
| Country: Australia | Date: Sun May 4 12:57:12 2003 |
| Comment: Wishing you all the best & Hoping everthing goes to plan | |
| Name: Wajid (Homepage) | |
| Country: pk | Date: Sun May 4 12:41:56 2003 |
| Comment: best wishes! | |
| Name: Flor (Homepage) | |
| Country: hk | Date: Sun May 4 12:38:18 2003 |
| Comment: | |
| Name: Walima (Homepage) | |
| Country: sg | Date: Sun May 4 12:16:22 2003 |
| Comment: willing the best wishes for mom and kidw | |
| Name: kristy (Homepage) | |
| Country: Australia | Date: Sun May 4 11:19:04 2003 |
| Comment: we r here 4 u | |
| Name: Moona (Homepage) | |
| Country: Green Land | Date: Sun May 4 10:47:41 2003 |
| Comment: | |
| Name: Teri (Homepage) | |
| Country: America | Date: Sun May 4 10:34:06 2003 |
| Comment: | |
| Name: Sushma (Homepage) | |
| Country: Nipal | Date: Sun May 4 10:25:36 2003 |
| Comment: best wishes for kid | |
| Name: Mike (Homepage) | |
| Country: USSR | Date: Sun May 4 10:22:45 2003 |
| Comment: hope this kid will be fine soon | |
| Name: Gabby (Homepage) | |
| Country: GL | Date: Sun May 4 10:13:41 2003 |
| Comment: | |
| Name: Virya (Homepage) | |
| Country: oh | Date: Sun May 4 09:46:57 2003 |
| Comment: | |
| Name: Merlyn Fernandes (Homepage) | |
| Country: Australia | Date: Sun May 4 09:42:25 2003 |
| Comment: | |
| Name: Fabian (Homepage) | |
| Country: NW | Date: Sun May 4 09:40:21 2003 |
| Comment: | |
| Name: Mathilda (Homepage) | |
| Country: Malaysia | Date: Sun May 4 09:37:13 2003 |
| Comment: | |
| Name: David (Homepage) | |
| Country: NVM | Date: Sun May 4 09:34:13 2003 |
| Comment: | |
| Name: Emran (Homepage) | |
| Country: hk | Date: Sun May 4 09:31:38 2003 |
| Comment: | |
| Name: Delia Reyes (Homepage) | |
| Country: tx, USA | Date: Sun May 4 09:30:33 2003 |
| Comment: willing that he will be fine soon. | |
| Name: Retna (Homepage) | |
| Country: indonesia | Date: Sun May 4 09:28:52 2003 |
| Comment: | |
| Name: Maria N (Homepage) | |
| Country: tx, USA | Date: Sun May 4 09:26:55 2003 |
| Comment: Best website | |
| Name: Adeel (Homepage) | |
| Country: | Date: Sun May 4 09:24:44 2003 |
| Comment: | |
| Name: Nadia Nadino (Homepage) | |
| Country: isb, pk | Date: Sun May 4 09:23:57 2003 |
| Comment: Sweet! | |
| Name: Ibrar-ul-Haq (Homepage) | |
| Country: Lhr, pk | Date: Sun May 4 09:22:45 2003 |
| Comment: don't give up | |
| Name: Iqra (Homepage) | |
| Country: Ind | Date: Sun May 4 09:21:40 2003 |
| Comment: Cinta kamu | |
| Name: Usman (Homepage) | |
| Country: PK | Date: Sun May 4 09:20:53 2003 |
| Comment: best wishes | |
| Name: Haseena (Homepage) | |
| Country: Pakistan | Date: Sun May 4 09:19:47 2003 |
| Comment: Good job | |
| Name: Ishfaq (Homepage) | |
| Country: Country | Date: Sun May 4 09:18:44 2003 |
| Comment: praying for the kid | |
| Name: Ali (Homepage) | |
| Country: NL | Date: Sun May 4 09:18:00 2003 |
| Comment: lovely | |
| Name: Noman (Homepage) | |
| Country: | Date: Sun May 4 09:17:26 2003 |
| Comment: | |
| Name: Emy (Homepage) | |
| Country: Pakistan | Date: Sun May 4 09:16:56 2003 |
| Comment: mom always loves | |
| Name: Ken (Homepage) | |
| Country: U.S.A | Date: Sun May 4 09:16:11 2003 |
| Comment: praying he will get well.. | |
| Name: melissa trehy (Homepage) | |
| Country: australia | Date: Sun May 4 04:21:23 2003 |
|
Comment: Hi Sammy-Joe just checking how you are going
| |
| Name: Sharon Slender (Homepage) | |
| Country: Australia | Date: Sun May 4 03:08:13 2003 |
|
Comment: Hi Sammy-Joe keep trying hard in everything and you'll do well. Our boys just keep trying Maria and are an inspiration to us all.
regards Sharon | |
| Name: Peter (Homepage) | |
| Country: | Date: Sun May 4 03:03:19 2003 |
| Comment: | |
| Name: ashley (Homepage) | |
| Country: england | Date: Sat May 3 20:54:58 2003 |
|
Comment: dear sammy joe
--ul b well-- i told ur mama what 2 do try it an wear that ring k an the v best in life | |
| Name: Gary Mitchell (Homepage) | |
| Country: USA | Date: Sat May 3 20:19:41 2003 |
| Comment: Good Luck. From the Mitchell Family and the La Junta VFD. | |
| Name: Chief M. Stark (Homepage) | |
| Country: USA | Date: Sat May 3 20:18:21 2003 |
| Comment: Good Luck from all of us at the La Junta Fire Department. Parker County ,Texas | |
| Name: michael wilson (Homepage) | |
| Country: USA | Date: Sat May 3 19:17:34 2003 |
| Comment: i am not sure what to say...this is such a heart touching story. god bless you all. | |
| Name: Dick Freeman (Homepage) | |
| Country: U.S.A.. | Date: Sat May 3 17:22:35 2003 |
| Comment: | |
| Name: tiffani crilly (Homepage) | |
| Country: usa | Date: Sat May 3 16:12:20 2003 |
| Comment: he is a beautiful little boy.. god bless you and your family!!!! id love to help with a donation.. please let me know where to address it!! Tiffani | |
| Name: Richard de Souza (Homepage) | |
| Country: Canada | Date: Sat May 3 15:31:25 2003 |
| Comment: I hope and plray that Sammy Joe gets better! This is such a heartwarming and heartbreaking story and all i can do is hope and pray for him and his loving family! | |
| Name: indarti (Homepage) | |
| Country: indonesia | Date: Sat May 3 11:36:26 2003 |
| Comment: may he has a wonderful life ahead | |
| Name: Gigie (Homepage) | |
| Country: | Date: Sat May 3 11:31:42 2003 |
|
Comment: great!
| |
| Name: Charmaine (Homepage) | |
| Country: Philippines | Date: Sat May 3 10:00:18 2003 |
|
Comment: A friend brought to my attention this website. I'm touched and will include these people in my prayers.
I'm happy that Sammy Joe and the rest have wonderful and supportive parents. | |
| Name: Debbie(coalition_of_da_willing (Homepage) | |
| Country: Australia | Date: Sat May 3 09:46:05 2003 |
|
Comment: Standing by,All the way.
Here to help you through your day. Holding you up,When you are weak, Helping you find what it is you seek. Catching your tears,When you cry. Pulling you through when the tide is high. Absorbing your voice,When you talk. Standing by when you learn to walk. Just being there,Through thick and thin, All just to say, you are my friend.NEVER LOSE FAITH, LIVE EVERYDAY AS UR LAST | |
| Name: Debbie(coalition_of_da_willing (Homepage) | |
| Country: Australia | Date: Sat May 3 09:42:33 2003 |
|
Comment: Standing by,
All the way. Here to help you through your day. Holding you up, When you are weak, Helping you find what it is you seek. Catching your tears, When you cry. | |
| Name: imran (Homepage) | |
| Country: pakistan | Date: Sat May 3 09:22:21 2003 |
| Comment: you are great and brave woman who is doing anything for her child... and i pray that your son will get well soon and also other kids who are suffring from this kind of problem... wish u all the best and i will be standing with you to do anything for this kid | |
| Name: imran (Homepage) | |
| Country: pakistan | Date: Sat May 3 09:14:34 2003 |
| Comment: you are great and brave woman who is doing anything for her child... and i pray that your son will get well soon and also other kids who are suffring from this kind of problem... wish u all the best and i will be standing with you to do anything for this kid | |
| Name: CHRIS & DEDRA (Homepage) | |
| Country: usa | Date: Sat May 3 05:42:12 2003 |
| Comment: we hope you the best of luck and wish you the best cherish your life you will get better your mom is truly a great person so i can only imagine how great of a person you are you mean the world to her so if you mean the world to her you mean something to me as well may god bless you and you are in my prayers love ya dedra and chris | |
| Name: BILL (Homepage) | |
| Country: USA | Date: Sat May 3 05:39:45 2003 |
| Comment: MAY YOU CHERISH WHAT YOU HAVE AND GOD BLESS YOU | |
| Name: BOB (Homepage) | |
| Country: USA | Date: Sat May 3 05:38:07 2003 |
| Comment: HOPE YOU GET BETTER AND BEST WISHES TO YOU AND BEST OF LUCK AND MY PRAYERS ARE WITH YOU | |
| Name: CHRIS (Homepage) | |
| Country: USA | Date: Sat May 3 05:37:02 2003 |
| Comment: MAY PEACE BE WITH YOU AND MY PRAYERS | |
| Name: amy (Homepage) | |
| Country: usa | Date: Sat May 3 05:35:59 2003 |
| Comment: hope you get better and wish you the best of luck may god be with you and you are in my prayers | |
| Name: CONNELL (Homepage) | |
| Country: USA | Date: Sat May 3 05:34:06 2003 |
|
Comment: I WISH YOU THE BEST AND YOU ARE IN MY PRAYERS
| |
| Name: RENE (Homepage) | |
| Country: USA | Date: Sat May 3 05:31:17 2003 |
| Comment: HOPE YOU GET BETTER YOU ARE IN MY PRAYERS GOD BLESS YOU AND YOUR FAMILY | |
| Name: MARMARSIE (Homepage) | |
| Country: USA | Date: Sat May 3 05:23:09 2003 |
| Comment: BEST OF LUCK, MY THOUGHTS AND PRAYERS ARE WITH YOU ALL! | |
| Name: dedra (Homepage) | |
| Country: united states | Date: Sat May 3 05:19:08 2003 |
|
Comment: i wish you the best you will always be in my prayers love ya all
| |
| Name: art (Homepage) | |
| Country: usa | Date: Sat May 3 03:10:30 2003 |
| Comment: from a freind | |
| Name: jamie dunaway (Homepage) | |
| Country: usa | Date: Sat May 3 02:58:26 2003 |
| Comment: best wishes from jj and jody....... | |
| Name: Jeff Leonard (Homepage) | |
| Country: usa | Date: Sat May 3 02:55:27 2003 |
| Comment: Great site. Hang in there from the La Junta VFD | |
| Name: Mike Stark (Homepage) | |
| Country: | Date: Sat May 3 02:51:48 2003 |
| Comment: great site | |
| Name: lisa mullins (Homepage) | |
| Country: usa | Date: Fri Apr 25 16:10:51 2003 |
|
Comment: sam you are a beautiful child live life to the fullest cutie pie (tell your mom she is special)
0 | |
| Name: Chris Lynch (Homepage) | |
| Country: Australia | Date: Tue Apr 15 04:34:40 2003 |
|
Comment: Hi Sammy-Joe & Family
If there is such a thing as a family of the year award,I'm putting my money on you guys.I know a bit about hardship and kids as I have a little boy aged five with Cerebral Palsy.Can you spare some of that love and energy???? I truly hope that 2003 brings much fun and happiness. Love to all Chris, Cristie & Sean | |
| Name: Lisa Robideaux (Homepage) | |
| Country: usa | Date: Mon Apr 14 06:43:12 2003 |
| Comment: I seen your web page address in the Mums letter. I hope all is well with u and your family. Keep looking up... | |
| Name: matthew cichy (Homepage) | |
| Country: USA | Date: Fri Apr 11 01:59:05 2003 |
| Comment: your story really touched me and i wish only the best for u. u will be in my thoughts and prayrs from now on | |
| Name: Rhonda (Homepage) | |
| Country: USA | Date: Wed Apr 9 21:30:15 2003 |
| Comment: aaaaawwwwwwww big kisses and hugs to u all ......love u guys!!!! | |
| Name: Lisa and Brett (Homepage) | |
| Country: Australia | Date: Sat Apr 5 11:23:40 2003 |
| Comment: Hi, Maria and family, what an inspirational and informative page, Brett says hello to Christian. We wish you continued joy and happiness to such a beautiful family. Lots of love from us all.ww | |
| Name: Nancy Ross (Homepage) | |
| Country: scotland | Date: Mon Mar 31 02:09:10 2003 |
|
Comment: I also have a son with TTD. lots of love Sammy-Joe and to all your family
| |
| Name: david (Homepage) | |
| Country: usa | Date: Wed Mar 26 15:10:33 2003 |
| Comment: a couple of cuties.>:-} | |
| Name: carrie anne bateman (Homepage) | |
| Country: western austral | Date: Sat Mar 8 13:55:28 2003 |
|
Comment: hope hes living life top the fullest and having lots of fun.
I hope one day soon they find a way to help people like sammy-joe | |
| Name: Daniela De Bortoli (Homepage) | |
| Country: Aust | Date: Fri Feb 28 12:31:53 2003 |
| Comment: With Love. You are amazing. | |
| Name: Paul McArdle (Homepage) | |
| Country: Australia | Date: Fri Feb 21 03:31:50 2003 |
|
Comment: Nice Page Maria!! Lots of info that doesn't ordinarily come to light...handy whilst at work!!!
Keep up the good work... Nice team photos with the bombers!! | |
| Name: Jo Pelham (Homepage) | |
| Country: Australia | Date: Tue Feb 18 01:48:36 2003 |
| Comment: Sammy-Joe! You are such a treasure to work with & I couldn't have asked for more!! I adore the way you & your family have pulled through hard times that you've had to grow up with but I truly believe that you all have been blessed by God so much. The amount of love that is shown in this family is beyond unconditional, it will never stop growing! All my love. xx | |
| Name: (Homepage) | |
| Country: Melbourne | Date: Thu Feb 13 03:02:15 2003 |
|
Comment: Maria
Saw the article on the Herald Sun. It good to see you and we always pray for Sammy-Joe. Brigid and I will forward you a donation and we will spread the word among our friends. However, I was a little disappointed that Sammy Joe supports the Bombers rather than the Cats! Your Cousin Anthony Cappello | |
| Name: Deborah Kimmorley (Homepage) | |
| Country: Australia | Date: Sat Feb 1 09:07:39 2003 |
|
Comment: I wish to lodge my interest in the article that is published in the "Thats Life" magazine. My nephew has also been diagnosed with the same disorder and my family would like any information that is available regarding this condition.
My sister(mother of Andrew)has asked me to make contact on her behalf due to limited access to the internet. Regards Deborah Kimmorley. | |
| Name: Chris, Lee and Talitha (Homepage) | |
| Country: Australia | Date: Fri Jan 31 00:34:08 2003 |
| Comment: Thank you for sharing your inspirational story, and thanks for the info re the on-line support group. I'm sure I will learn lots that will help us with our daughter, aged 4, who has TTD. | |
| Name: betty halliday (Homepage) | |
| Country: tasmania | Date: Wed Jan 29 11:49:52 2003 |
|
Comment:
Hello Sammy joe& family My thouhts & prayers are with you I hope a cure comes soon for your beautiful Son.I hope to send a small donation of 10 dollars to your cause soon kind regards Betty Halliday. | |
| Name: jo (Homepage) | |
| Country: australia | Date: Wed Jan 29 02:21:52 2003 |
| Comment: hi i would just like to say that the article in thats life was very interesting and i thought id have a look at ur web site and i found that very interesting too. I had never heard of that condition b4 so i have learnt something new, all the best. | |
| Name: jennifer (Homepage) | |
| Country: melbourne | Date: Fri Jan 24 07:42:50 2003 |
| Comment: To Sammy Joe i would love u to get better so u can know how it feels to be free.although ur probably havin a good life anyway so good luck love jennifer ross | |
| Name: Robyne (Homepage) | |
| Country: Australia | Date: Thu Jan 9 08:19:58 2003 |
|
Comment: To my very dear friends, Maria, Joe, Sammy Joe and Christian. Thinking of you always. May we all fly as one beautiful angel to help you reach that shining star. Looking forward to catching up in a couple of weeks.
Robyne, Daniel, Harrison and Tess | |
| Name: auntie margret (Homepage) | |
| Country: australia | Date: Wed Jan 1 00:55:22 2003 |
| Comment: Sammyjoe, you are my shining star, i am blessed to have you in my life. cant wait for my big kiss and hug. i love you. xxxxxxxxxxxx | |
| Name: david (Homepage) | |
| Country: australia | Date: Wed Jan 1 00:43:41 2003 |
| Comment: Sammy joe my big cuz.....i love u lotz and i hope u can live ur journey to the end and well done aunti maria, uncle sep and christian uve done a great job taking care of sammy joe. luv david | |
| Name: Kristy Doolan (Homepage) | |
| Country: Australia | Date: Mon Dec 23 06:59:03 2002 |
|
Comment: hey guys, the article is very touching. It puts life into perspective and how privlidged I am to know you all and to see first hand how courageous, determined, loving and strong you are. God has given you this path for a reason and only he knows why, so I wish you all the best with this precious time you do have and remember I love and miss you guys, take care and god bless.
| |
| Name: Kelly (Homepage) | |
| Country: ontario Canada | Date: Fri Dec 20 11:56:34 2002 |
|
Comment: If you know anyone with this disorder ,please pass on our support groups email address .It is TTD-support-subscribe@yahoogroups.com and TTDFamilyTogetherGroup@groups.msn.com
Together we stand ,united as a small family with a bond that distance cannot break. Through laughter and tears we share a bond , that is immense Love for our children! | |
| Name: Maria Liistro (Homepage) | |
| Country: Australia | Date: Fri Dec 20 11:50:43 2002 |
| Comment: We now have two support groups running for families who have children with Trichothiodystrophy and we also go under the umbrella of the Genetic Support Network of Victoria, please contact me to assist you in joining, if anyone wants to donate money to our group and to Sammy-Joe trust fund please contact me also, the money will go to help the group to run and to one day get the families over to America when gene therapy becomes available. God Bless and Thank you | |
| Name: Kelly (Homepage) | |
| Country: Canada | Date: Fri Dec 20 11:39:38 2002 |
|
Comment: Maria ,Michelle Curtis and I have set up a support Group called The TTD-support group and also another group called TTDFamilyTogetherGroup@groups.msn.com
Please pass on any families or people that may have anyone affected by Trichothiodystrophy to us. | |
| Name: Kelly (Homepage) | |
| Country: ontario Canada | Date: Fri Dec 20 08:16:51 2002 |
| Comment: I also have a son who has TTD.We deal with Toronto Hospital for sick children.The dermotologist there is the one who has diagnosed Jake,has only seen this disorder once in her life, and she is a well travelled individual I have been in contact with Maria for a few months now. Thru her and Michelle Curtis's dilligence , we have formed a support group that now has twelve families . Each family has at least 1 child that carries this disorder,If you or someone you know is aware of anyone with this | |
| Name: MICHELLE CURTIS (Homepage) | |
| Country: AUSTRALIA | Date: Fri Sep 13 05:52:40 2002 |
| Comment: TO A WONDERFUL FAMILY WE ARE SO LUCKY TO HAVE BEEN GIVEN TO OPPORTUNITY TO MEET YOU ALL. MADELINE MY 6 YEAR OLD DAUGHTER HAS TTD AND FOR SO LONG WE THOUGHT WE WERE ALL ALONE , TO BE ABLE TO MEET SAMMY JOE AND HIS FAMILY HAS CHANGED OUR LIVES. HE IS AN INSPIRATION WITH A VERY CHEEKY SMILE AND HE HAS A BEAUTIFUL FAMILY. I CAN'T STOP THINKING ABOUT HIM. WE WILL SEE YOU SOON. LOVE MICHELLE , TIM, MADELINE & TATE | |
| Name: Sandy & Nancy Inturrisi (Homepage) | |
| Country: Australia | Date: Thu Sep 12 01:04:00 2002 |
| Comment: To our Great Nephew Sammy Joe. We have watched you growing up through all the ups and downs. Your courage and strength are inspiation for us all and when you smile you light up the world. We are always here to love and support you. Love always Uncle Sandy and Auntie Nancy | |
| Name: Katy (Homepage) | |
| Country: Australia | Date: Wed Sep 11 11:54:36 2002 |
| Comment: I love you Sammy-Joe! I feel so blessed to have you in my life, and love all the time we share together. I love all you Liisto's! You are all so warm and welcoming, a beautiful family whom I admire. Thankyou for your support and patience with me, for sharring your love. xx | |
| Name: joey inturrisi (Homepage) | |
| Country: australia | Date: Tue Sep 10 02:56:27 2002 |
| Comment: hi since u know that im good at this stuff i just want to say im giving you all my love and hope for you and sammy joe (thats including christian and uncle sepp)and that next time my school band gose to yoralla ill bug bug bug and more bug to get my band to go love always ur nephew joey xxxxxxooooooooo | |
| Name: Sharon Slender (Homepage) | |
| Country: Australia | Date: Mon Sep 9 13:53:56 2002 |
|
Comment: Hi Maria,
wow haven't you found out some great stuff.Our James is 5 years old and doing really well at the moment. We've had many ups and downs for those years but at the moment we're winning. I took him to the beach on Saturday for the first time and he cried " no like it mummy, take me home please" was the words , but I guess next time he'll enjoy it more.Keep up the tremendous work . Sharon | |
| Name: Linda Crisci (Homepage) | |
| Country: Australia | Date: Mon Sep 9 08:35:12 2002 |
| Comment: Inspiring informative story | |
| Name: Robyne (Homepage) | |
| Country: australia | Date: Mon Sep 9 07:30:26 2002 |
|
Comment: I was truely blessed when your family became my friend almost 10 years ago. What can I say...you will always be inspirational to me and you are all in my heart and thoughts always. Sammy-Joe being your teacher was one of the best thing that ever happened to me. You have all taught me so much about life, love and the world around us. Keep reaching for those stars......
your friend Robyne | |
| Name: Felicity Baddeley (Homepage) | |
| Country: Australia | Date: Mon Sep 9 06:10:09 2002 |
|
Comment: Dear Maria
What can I say? You continue to amaze me each and every day, you never give up and always challenge the system. Working with you, Sammy-Joe and your family has been a wonderful experience and one that I am very proud to be a part of. You strength and committment is an inspiration to everyone. Well done Maria you should be very proud off all that you have achieved. Love Felicity P.s Don't foget to look after yourself!!! | |
| Name: Michael & Kim Inturrisi (Homepage) | |
| Country: Australia | Date: Mon Sep 9 03:22:58 2002 |
| Comment: To our beautiful cousin. What a gift it is to have you in our lives, it opens your eyes to how trivial some things in our lives are when we see what you have to go through. You know we'll always be there for you, Maria, Sep, and Christian, wherever and whenever you need us. P.S. RB and Jess can't wait till you visit again. | |
| Name: Connie &Claude Inturrisi (Homepage) | |
| Country: Australia | Date: Sun Sep 8 13:50:37 2002 |
| Comment: To our godson Sammyjoe all our love is sent to you in this short message. To be able to know and love someone as special as you is a beautiful gift in life. To Maria, Seppe and Christian love you always Auntie Connie, Uncle Claude, Joey, Melanie and Johnny. | |
| Name: RONNIE (Homepage) | |
| Country: australia | Date: Sun Sep 8 10:59:56 2002 |
|
Comment: Dear Maria and family,
I wish all the best to find a cure for Sammy-joe's disorder and have all my love for him. I feel really really really sorry for him because when i go outside i think to myself just if Sammy-joe could have as much fun as i am in a t-shirt and shorts on a sunny day. I wish Sammy-joe all the best i can give. All the love i can give Sammy-joe with his disorder. Love from Ronnie. | |
| Name: melanie (Homepage) | |
| Country: australia | Date: Sun Sep 8 10:40:06 2002 |
| Comment: To sammyjoe and family just writing to say that i will always love sammyjoe with all my heart and i'll keep on praying 4 a cure.love always mel | |
| Name: Emilia and Joe Inturrisi (Homepage) | |
| Country: Australia | Date: Sun Sep 8 10:00:10 2002 |
|
Comment: To Christian our gorgeous grandson we realise how hard it must be for you to watch your big brother Sammy-joe that really isnt very big at all to go through all this ,and we love and adore you both and hope that all your lives change soon and that there is a treatment to help Sammy-joe play in the sun with you. we love you forever our beautiful boys
| |
| Name: Sam and Pina LIIstro (Homepage) | |
| Country: Australia | Date: Sun Sep 8 09:50:59 2002 |
| Comment: we love you both Sammy-Joe and Christian and we couldnt live without you both , you are our beautiful grandchildren sent from God and we are very proud of your mum and dad with their couragious strength | |
| Name: Sam and Pina LIIstro (Homepage) | |
| Country: Australia | Date: Sun Sep 8 06:16:56 2002 |
| Comment: To our beautiful grandson Sammy-Joe we love and adore the way you are with your special smile and your special hugs,and we wish for you all the universes strength tn order for you to grow and blossom as you should, if we could give you the stars ,the moon ,the universe we would, we love you very very much,and we want to continue to hold you in our arms always we love you forever. | |
| Name: antoinette gioskos (Homepage) | |
| Country: australia | Date: Sat Sep 7 15:02:06 2002 |
|
Comment: Maria you simply amaze me!! I'm happy and sad you have finally found out what Sammy-Joe has. You have waited to know for so long. I want you to now that you are a remarkable beautiful giving intelligent strong selfless and unique person. Ilove you very much.
Dearest Sammy-Joe you are truly one of a kind. Your gorgeous eyes that melt your heart when you look into them, your voicetrous manner no-one can forget you (especially when you go shopping)and your sunny smile that lights up the room | |
| Name: Michael Loughnan (Homepage) | |
| Country: | Date: Sat Sep 7 10:06:42 2002 |
| Comment: Thanks for letting me know anout Sammy Joe. What a lovely little boy. | |
| Name: Teresa Giompapa (Homepage) | |
| Country: Australia | Date: Fri Sep 6 14:15:31 2002 |
|
Comment: Hi Maria & Family,
You always amaze me and inspire me with your courage & determination. Your love is so grand - it can fill the universe plus more. I am saddened by your recent news but yet relieved that you finally have the answer - at least now I know you can focus all your energy on moving forward and realising all of your family's dreams. Sammy-Joe is so beautiful and special and so lucky to have parents like you. Your letter was very touching and brought tears to my eyes. I wish you a | |
| Name: Teresa Giompapa (Homepage) | |
| Country: Australia | Date: Fri Sep 6 13:51:04 2002 |
|
Comment: Hi Maria & family,
You continue to amaze me and inspire me with your courage and determination. Your love is so grand and could fill the world and more. I am saddened but also relieved of your recent news, because I know now, you can spend your energy to continue to move forward and realise all of your family's dreams. Your letter was very touching and brought tears to my eyes. I wish you all the best and please give Sammy-Joe a big hug and kiss from me. Love, Teresa and Biag. | |
| Name: Julie Gray (Homepage) | |
| Country: Australia | Date: Fri Sep 6 06:03:25 2002 |
|
Comment: Sammyjoe attends a Youth Group run by Yooralla Society called the "Northern Explorers" We do all sorts of things like swimming, cooking, bowling, movies, BBQ's and more. It's really good fun!
Although Sammyjoe is not able to attend the group all the time, the times he can join us the group feels complete!(and a little louder) Sammyjoe brings his bright and bubbly personality and the group dynamic is instantly changed. It's Fantastic! Julie Gray | |
| Name: kelly osborne (Homepage) | |
| Country: Ontario, Canada | Date: Thu Sep 5 20:02:37 2002 |
| Comment: i also have a son, who has been diagnosed with trichothiodystrophy. He will be 2, and presently exibits many symptoms, although to the extent, we do not as of yet know. | |
| Name: Anne Sash (Homepage) | |
| Country: Australia | Date: Thu Sep 5 13:01:03 2002 |
|
Comment: Sammy-Joe and family - As a homeopath I was very interested to read your story. I saw the front page story in the "Hume Leader" newspaper (3rd Sept 2002), which is where I found your web address.
Wishing you all the best. Anne Sash | |
| Name: Deborah Clow (Homepage) | |
| Country: Australia | Date: Wed Sep 4 15:36:26 2002 |
|
Comment: Dear Maria and Sammyjoe, So sorry to hear of this latest news. After so many years of people trying to guess at the problems you had to now find out that we could of all helped in so many ways other than the way we did. I'm glad that we had a sun policy when Sammyjoe was at kinder with me and I'm thinking of you both with lots of love. You are both very strong in the heart and mind.
Luv ya both. | |
| Name: Danny D (Homepage) | |
| Country: Australia | Date: Wed Sep 4 15:14:16 2002 |
|
Comment: Hi Marie..
I am glad that this page is going good for you and hope you get alot of response from it | |
| Name: Jessica Barbagallo (Homepage) | |
| Country: australia | Date: Wed Sep 4 15:12:18 2002 |
|
Comment: You're a beautiful boy whose smile can brighten up the even the longest day.
Maria we've never met anyone as selfless as you. You're an inspiration to everyone. love Cettina Jessica and Melissa. Keep Smiling! | |
| Name: Sam Barbagallo (Homepage) | |
| Country: Australia | Date: Wed Sep 4 14:35:28 2002 |
| Comment: You and Sammy Joe are remarkable people! I hope one day that you are rewarded for all the hard work and effort you have put into this. We are honoured to be your cousins. | |
| Name: Ronda Kay (Homepage) | |
| Country: australia | Date: Wed Sep 4 12:22:50 2002 |
|
Comment: My daughter Kimberlee is 8 years old and was diagnosed with this at 5 years. We just thought all of her problems were from being really premmie. Kim has a severe hearing loss, doesn't speak, has hypothyroidism and severe scoliosis
requiring many surgeries. I am so happy to finally find some others with a child with this sydrome. | |
| Name: Sammy Smith (Homepage) | |
| Country: USA | Date: Wed Sep 4 10:50:05 2002 |
| Comment: Thumbs up for Sammy-Joe and the whole family! You've made lemonade out of life's lemons. | |
| Name: Sandra and Nick (Homepage) | |
| Country: Australia | Date: Wed Sep 4 07:55:39 2002 |
| Comment: To our beautiful,special great nephew ,we have learned so much by having you as part our lives, we believe that God has created you ,just as you are,inspite all of your pain and suffering and your challenges to be accepted in society,you continue to rise above it all and show your radiant smile that can fill a room and we hope that others will become aware of your daily struggle.we love you forever.your zia Sarsha and your uncle Nick | |
| Name: Maria and Joe Liistro (Homepage) | |
| Country: Australia | Date: Wed Sep 4 02:14:42 2002 |
| Comment: This Message is for our son Christian who came to us from God, we love and adore you and hope that you feel and know that we love you as equally as we love Sammy-joe , we could not live life without you, our strong ,wise ,young Man you are our angel, you were heaven sent to us from God when we thought we couldnt have anymore children God blessed us with you. We Love and adore youxxxxxxxx | |
| Name: franca (Homepage) | |
| Country: Australia | Date: Wed Sep 4 01:36:53 2002 |
| Comment: Dear gorgeous boy, I love the way you look straight at me, and with a mischievous grin pasted across your face, you call me Keana or Harley! May all the Heavenly Beings look down on you and your family and bless you all, every single day. With love Franca | |
| Name: Nertha (Homepage) | |
| Country: USA | Date: Wed Sep 4 01:34:52 2002 |
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Comment: Hi Sammy Joe,
Really enjoyed reading about you. You and your brother Christian are very handsome young men! :-) Your entire family is so corageous that you encourage the rest of us! Keep up the good fight and enjoy each day to the maximum. Your Internet Friends, Nertha & Family | |
| Name: Jonesy (Homepage) | |
| Country: Canada | Date: Wed Sep 4 01:29:47 2002 |
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Comment: Sammy-Joe, you are an inspiration to others and are surely blessed to have such caring parents. God Bless you!
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| Name: Lita (Homepage) | |
| Country: USA | Date: Wed Sep 4 01:03:09 2002 |
| Comment: While we have no TTD in our family we have a couple nephews with FragileX Syndrome and my husband's sister who had muliple problems. They all had a zest for life that almost makes you embarrassed to complain about anything! Somethimes I think we forget what blessing are and what we truly have. You seem to have a good grip on life. Enjoy! | |
| Name: Polly (Homepage) | |
| Country: USA | Date: Tue Sep 3 20:06:12 2002 |
| Comment: Sammy Joe looks like a very happy child which means you are a very good mother. | |
| Name: Maria Guzzardi (Homepage) | |
| Country: Australia | Date: Tue Sep 3 08:55:20 2002 |
| Comment: Your radiant smile and precious eyes make me laugh. I look forward to your special hugs. God bless and look over you always. | |
| Name: Maria Guzzardi (Homepage) | |
| Country: Australia | Date: Tue Sep 3 08:45:48 2002 |
| Comment: Your radiant smile and precious eyes makes me happy. I look forward to your special hugs. | |
| Name: Maria and Joe Liistro (Homepage) | |
| Country: Australia | Date: Tue Sep 3 05:33:10 2002 |
| Comment: Our beautiful and strong willed boy , we love and are always inspired by your warmth and love.You always seem to have all the right gestures of warmth and compassion, your love continues to spill over on everyone you meet. | |
| Name: Christian Liistro (Homepage) | |
| Country: Australia | Date: Tue Sep 3 05:28:09 2002 |
| Comment: my gorgeous big brother, I love you and want to always wrestle with you and play on the trampoline out of the sun, stay with me and grow big with me,even if you do like messing up my room, I dont care I can clean it up | |
| Name: Emilia and Joe Inturrisi (Homepage) | |
| Country: Australia | Date: Tue Sep 3 05:25:13 2002 |
| Comment: Sammy-Joe our beautiful grand child ,we love and adore you and hope that you can continue to play and stay with us for the rest of our days , walking hand in hand loving life the way you know how , we love and adore you our precious boy | |
| Name: Michelle Curtis (Homepage) | |
| Country: Australia | Date: Tue Sep 3 04:58:47 2002 |
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Comment: Hi Maria'
Hope I'm the first person to sign your guest book, how special. Love Shell | |
| Name: Kylie Blair (Homepage) | |
| Country: | Date: Mon Sep 2 14:43:16 2002 |
| Comment: Thanks Maria - I found it so helpful to get the specifics. Hope Sammyjoe got off to sleep ok. I really enjoy my time with him, such a beautiful boy. Thanks (as always) for a lovely dinner! and I'll see you all in two weeks. love kylie | |
| Name: Valerie Natale (Homepage) | |
| Country: USA | Date: Mon Sep 2 14:33:43 2002 |
| Comment: Thanks for making such a great web site. I learned a lot by reading it. You have a beautiful family! --- Valerie | |
| Name: Carolyn Tanti (Homepage) | |
| Country: Australia | Date: Mon Sep 2 11:02:23 2002 |
| Comment: I have had the pleasure of Sammy-Joe in our home,playing with our dogs, and it was an amazing experience to see one so passionate about animals. Our love to you all. | |
| Name: Chris Sheather (Homepage) | |
| Country: Australia | Date: Mon Sep 2 10:54:00 2002 |
| Comment: To know this family is an honour and an inspiration to all.I have been lucky to know this amazing family for 14 years and I love and admire them all. | |
| Name: Lynda (Homepage) | |
| Country: Australia | Date: Mon Sep 2 02:30:16 2002 |
| Comment: What an inspiring web page! You are a beautiful family. I pray that your website will inspire those who can to persevere in their quests to find treatments and cures for all the beautiful children in the world who carry adult sized burdens. Congratulations for reaching out. | |
| Name: Karen Harbaugh (Homepage) | |
| Country: USA | Date: Sun Sep 1 14:19:06 2002 |
| Comment: Great site! I learned of the site through the XP Connection. My daughter Heather has XP. Thanks for sharing. | |
| Name: Nancy Fenton (Homepage) | |
| Country: United States | Date: Sun Sep 1 04:08:08 2002 |
| Comment: By Jove I finally got it. Really enjoyed seeing the photos of you all. What a cute little chap he is. All these CS children look alike, but he definitely does not have that look. Thanks for all your trouble. It is a pleasure "talking" to you. Nancy Hugs to the boys | |