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Entertainment Memberships include over $20,000 worth of valuable 2-for-1 & up to 50% off offers from many of the best restaurants, arts, attractions, hotel accommodation, travel & much more! Books can be purchased directly from Maria or ordered online. Alternatively, there is an app available. The books are $70 each.
A page has been set up on GoFundMe to help Sammy-Joe with his medical needs - the costs are so high and the family is struggling. Please help by donating. We need to provide funds for over the counter medications and expensive prescription drugs that are not covered by the PBS. Please click here to donate.
Thank you so much for your support.
Sammy-Joe with mum Maria
What is Trichothiodystrophy? Trichothiodystrophy (TTD) is a rare genetic disorder that involves the production of abnormal brittle hair, icthyosis, and physical and developmental disorders. It can also involve ataxia, stunted growth, and skin sensitivity to light and UV rays. TTD is a seriously disabling disorder with a severe skin affliction and serious developmental defects and growth retardation. It can also cause immune deficit cells, premature aging in facial features, cataracts and dental abnormalities, poor weight gain, autistic characteristics such as irritation to high frequency sounds, and repetitive movements and behaviours. It is one of a group of diseases - the others being xeroderma pigmenentusm and cockayne syndrome. It is a rare and recessive disorder, and patients can be characterised by symptoms of sulphur deficient hair, and in about 80% of cases, photosensitivity. There have been no reports of association with skin cancers, but patients have been known to have short life expectancy. Diagnosis is made by studying the hair mounts, and by amino acid analysis which demonstrates decreased high sulphur matrix proteins. The hair is so brittle that once it emerges from the skin and becomes exposed to the environment, the hair breaks and fractures, and so the result is brittle, short and sparse hair. This is why most of the children with TTD have sparse eyebrows and eyelashes. There is currently no treatment for TTD.
PLEASE HELP!! A ‘Friends Of Sammy-Joe’ donation charity tin was recently stolen from a pharmacy in Craigieburn. Please help us to find the thief. Click here to visit 9 News to read more Click here to read more also Click here to read Hume Leader’s article on the community stepping up to help
Click here to read a post by Maria Vamvakinou MP about Sammy-Joe & Trichothiodystrophy (TTD)
Now Available: Turi Trust Charity Documentary - click here to watch (YouTube)
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