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About Sammy-Joe

My son Sammy-Joe has TTD and has only recently been diagnosed. He was born by emergency caesarean section at 38 weeks. He was smaller than expected for a child at that age, and his head was 26% smaller compared to the norm. He was born with curly, brittle hair, short and sparse, small eyes, dry skin and very floppy. He weighed 5lb 2oz and lost a dramatic amount of weight in the first two days of his life. He lost all of his hair after having a temperature, while having a bath in the hospital. He had difficulties suckling, and failure to thrive. Because of his poor immunity, he has had many stays in hospital throughout his life undergoing extensive tests, gammaglobulin treatment, surgery and rehydration. He has lactose intolerance, ataxia, speech delay, autistic characteristics, poor weight gain and stunted growth. Certain sounds and lights affect him, triggering him to scream as if in pain, which I now believe at times truly hurts him. He is photosensitive to the light and refuses to wear short sleeves due to the sun hurting his skin. For years I couldn't understand why he wanted to wear long sleeves on a 40 degree celcius heat day. Now I know why...he cannot be exposed to too much sunlight, he is quite fragile and sometimes unsteady on his feet, and often faints when he is unwell. Aside from all the trials and battles in his life, he is a happy child that has a passion for books, videos, nursery rhymes, The Muppets, animals, stuffed toys and James Hird from the Bombers. My sister in-law once said, "imagine if everyone had the same passion for things, or loved the same way Sammy-Joe does, this world would be a better place". I have often been asked what does the future hold for my son's life, and I would be lying if I said it doesn't scare me. In fact it scares me so much my response is always "nobody really knows". The other children with TTD that I am in contact with are all younger than him, and because this disorder is so rare, I have only been able to find 36 other children in Australia (although this number is growing), and 196 world-wide. In 2003 we travelled to America to meet up with scientists and doctors from NIH and MAYO Clinic and UCSF Hospitals which helped change the quality of his life. Although not cured his quality has greatly changed. Sammy-Joe is my pride and joy, my heart and soul, and my whole reason for living. He is truly a miracle child and a survivor, an inspiration to his family and friends. His brother Christian adores him, and he is the apple of his Dad's eye. We love both our children and have taught them to be very proud and stand tall, despite all the challenges that life brings us. Sammy-Joe constantly amazes me with his incredible happiness and his sheer love of life. Like all parents, we want everything for our son, and thinking ahead about what the future may, or may not hold, makes me strengthen my determination to see that my child has every opportunity and experience he deserves. Sammy-Joe's diagnosis has forced us to re-evaluate our entire lives and the way we live. We surround ourselves with family and friends who understand and are sensitive to our situation. We decided as a family that whilst this diagnosis is devastating and we have no control over it and the final outcome, we do have control over the way we manage our situation and the way we choose to give Sammy-Joe a quality of life that best suits him. The simple things in life really do mean much more, and spending quality time with Sammy-Joe means so much more to all of us. We all live day by day and enjoy every moment with our precious little boy. I'd like to tell you all that as long as we are blessed with Sammy- Joe, we will have all that we need. Everything else seems so unimportant. He will always touch hearts, and even change lives with his smile. Sammy Joe at Age 17 Sammy-Joe had surgery for a food peg as he lost his ability to chew and swallow after regression. We understand and know that his condition is progressive and we are dealing with our grief. Sammy-Joe’s trip to America was postponed due to his condition and a stay in hospital, but we raised the money to go back to the USA. He was going well but hit a stage of regression. He lost his ability to speak which was extremely hard for him to adjust to his new way of life with his food peg, which we named "POLLY ". All the new medications he was on and the new way of living was also a big adjustment. He used his wheelchair more often, and I suspect that there will be more changes to Sammy-Joe’s life as he gets older, reminding everyone that this is a neurodegenerative disease and as time gets on Sammy-Joe may or may not lose some other abilities. Because his condition is so rare it is still unknown as to what to expect, but we do know that it is a life threatening illness and DNA cannot repair itself. Cells die off and mutate due to the UV exposure, no matter how minimal it is. So what ever happens it is irreversible and it is highly likely that it will progress, and will be a progressive deterioration. This has been quite difficult for us to accept and it is very painful to watch our beautiful boy slowly deteriorate. Latest Update on Sammy Joe Sammy-Joe has had 10 great years at home under our full-time care. He is now in his mid 20’s and his condition is stable. He has home oxygen, an air mattress, a wheelchair, a walker, a bath lift and a hospital bed. He is happy and surrounded by his loving family who adore him very much. Maria Liistro

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