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Email: firstname.lastname@example.orgMail:The Friends of Sammy-Joe Foundation, 13 Hursley Court, Craigieburn, Victoria 3064 AustraliaPhone: Fax:0407 558 151 03 9305 7591Visit Us On:
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Entertainment™Membershipsinclude over $20,000 worth ofvaluable 2-for-1 & up to 50% offoffers from many of the bestrestaurants, arts, attractions,hotel accommodation, travel& much more!Books can be purchased directlyfrom Maria or ordered online.Alternatively, there is anapp available.The books are $70 each.
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A page has been set up onGoFundMe to help Sammy-Joewith his medical needs - the costsare 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 thatare not covered by the PBS.Please click here to donate.
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.