Tonight I want to talk about a family in my electorate of Calwell whose little boy Sammy Joe Liistro suffers from a rare genetic disorder called trichothiodystrophy. It is so rare that Sammy Joe is one of only 14 children to have this condition in Australia. Sammy Joe's mother Maria recently came to see me to seek my assistance in her battle to raise awareness about her son's condition and to also hope to pursue a better quality of life for him. Maria has written a letter to all federal members of parliament and she has asked me to read this letter. It states:
Dear Members of Parliament I am writing this letter as a parent of a child who has a critical illness in the form of a rare genetic illness called Trichothiodystrophy, which means that any exposure to UV light is potentially fatal due to the severe irreparable damage that it causes. This exposure to UV light breaks down his DNA killing the cells and destroying his immune system. This impact on his immune system means that he is susceptible to frequent infections, which have often led to hospitalisation and on occasions have placed Sammy Joe in a critical condition. The effects of Trichothiodystrophy are fatal and as a result my son's life expectancy and quality are greatly reduced. If he goes out into the sun he screams with pain, his hair falls out, his skin blisters, he becomes nauseous and becomes bedridden. (This happens even when my son is fully clothed) After 14 agonizing years I went to the United States, which finally led to the correct diagnosis of this disorder. Sammy Joe finally received the medical care that he needed. The medication that the American doctors prescribed had a remarkably instantaneous impact on my son's life. Upon arriving back to Australia I found that Sammy Joe was continually let down by the Australian medical system to the point that his current quality of life was at risk to the level that a further deterioration could lead to death. It further frustrates me that the simplest of medical care in the form of the correct medications for my son is currently in jeopardy because of doctors' lack of understanding. The doctors here are failing to follow up on the most basic medical advice given to them by the experts in America. It has been noted by a leading Geneticists that we have reached the limits of our current medical knowledge and that there isn't enough funding to do research on this disorder. There are 13 other children in Australia that are suffering from this condition.This situation needs to change immediately. It is not acceptable and I'm not going to put up with it. Research needs to be funded right now to alleviate the suffering of children with this condition.
Two years ago in this House we debated and voted on the stem cells research bill. Many members who supported this bill, and I was one of those members, did so because we believed that this legislation would give people like Sammy Joe Liistro hope of finding a cure for their rare genetic disorders. I hold faith and look forward to Australian medical scientists, like their counterparts in America, being able to continue to conduct the necessary research into rare genetic disorders such as trichothiodystrophy so that cures can be found for little boys like Sammy Joe Liistro.
Sammy Joe Liistro is a special child, but he also has a very special family and, indeed, an extraordinary mother. Maria Liistro wants her son to have the best possible quality of life: to be able to get out of bed every morning, to enjoy life, to attend school and, as Sammy Joe constantly says to her, `to make the hurt go away'. Efforts have been made to improve Sammy Joe's quality of life, but it is obvious that more research is required into this very rare genetic disorder. I would like to encourage Australian scientists, doctors and geneticists who are interested in conducting research in this area to take a particular interest in trichothiodystrophy because, even though only 14 children may suffer from this condition in this country today, it is so difficult to diagnose that it is possible that a lot of other kids may have this condition and go undiagnosed. Incidentally, as rare as it is, Australia is the only country in the world that has such a great number of people suffering from this genetic disorder.
