On Wednesday the 4th of August, Maria Vamvakinou MP stood up in Parliament to speak about the pain and suffering endured by Sammy Joe and his family as a result of his rare genetic disorder, trichothidystrophy.
Craigieburn teenager, Sammy Joe, suffers from an incredibly rare and debilitating genetic illness, trichothiodystrophy, which results in hyper sensitivity to UV light. If exposed to sunlight, even wearing sunscreen and clothing, Sammy-Joe suffers agonising pain, hair loss, nauseous and he becomes bedridden. However, this disorder is so rare that it took Australian doctors fourteen years to diagnose him. Indeed, so limited is Australian medical science and practitioners knowledge of this disorder that one specialist remarked that Sammy Joe’s mother, Maria “probably knows more about it than we do.”
“Two years ago, I debated and voted in favour of the stem-cells research bill, because I believed that this legislation would give people like Sammy Joe Liistro hope of finding a cure for their rare genetic disorders, Maria Vamvakinou said.
“I hold faith and look forward to Australian medical scientists, being able to continue to conduct the necessary research into rare genetic disorders such as trichothiodystrophy so that cures can be found for boys like Sammy Joe Liistro.
In addition to her speech in Parliament, Maria Vamvakinou MP has also forwarded on a letter from Maria Liistro to every single Australian Member of Federal Parliament, to raise their awareness of the critical need for more research to alleviate the pain of people suffering of people from genetic illnesses.
