Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 Kids hope to C cure http://www.news.com.au/heraldsun/story/0,21985,21626160-24331,00.html Kamahl Cogdon April 27, 2007 ANITA Fiorillo was on kinder duty when she noticed daughter Bianca was not quite keeping up with the other kids in the playground. " I didn't really pick it up at home, " Mrs Fiorillo said, " but once she got into a group of other children the same age, I noticed a little difference. " She had a slower run. She didn't pick up speed like a normal run. It was more like heavy stomping. " And her climbing ability was not the same. She'd only get half way up a climbing apparatus, whereas other kids would get right to the top and back down again. " Mrs Fiorillo took her concerns to doctors at the Royal Children's Hospital and last September Bianca, now 6, was diagnosed with Charcot-Marie-Tooth disease, an inherited genetic disorder that affects mobility and sensation in the feet, legs, hands and forearms. On the same day, dad was in Geelong Hospital having tests after sudden paralysis in his arms and legs. His diagnosis: CMT. The family, from the Geelong suburb of Lovely Banks, has since had apparently healthy son Tony, 3, tested and discovered he too has CMT. Bianca and Tony will be part of a trial offering hope to young CMT sufferers. RCH pediatric neurologist Dr , Sydney podiatrist Dr Josh Burns and Prof Ouvrier, from Sydney's Westmead's Children's Hospital, hope high doses of vitamin C could relieve children's CMT symptoms. Their trial follows a landmark French study, which found high doses of vitamin C helped mice overcome a mouse version of CMT. Dr said CMT had a significant impact on a child's life. " It causes a 20 per cent drop in their quality of life and it's purely because they can't keep up with their peers physically, and it depresses them, " she said. " Most of the kids say they don't understand why they can't run as well as their friends or climb the monkey bars or play footy or why they are the last kid picked for a team. " Mr Fiorillo, who is overcoming a second bout of paralysis since his CMT diagnosis, said the vitamin C trial offered his children hope. " The last thing I want is to see my son and daughter go through what I have with this disease, " he said. " I wouldn't wish it on my worst enemy. " CMT is an umbrella term for 50 to 60 disorders of the peripheral nervous system, which controls our ability to move and feel parts of the body. The nerves of the arms and legs gradually stop working, leading to wasting of the muscles served by those nerves. Dr said symptoms were often difficult to detect early but became more pronounced and painful as the condition progressed. Foot deformities such as flat feet or high arches and clawed toes were common. As sufferers aged, they often developed chronic arthritis and lost sensation in their hands and feet, Dr said. The disease, named after three doctors who recognised it in the 1880s, is usually inherited and is incurable. In the Australian vitamin C study, a group of 30 children, aged two to 16, will be given a high daily oral dose of vitamin C and another group of 30 will be given a placebo. Their nerve function, foot and ankle muscle strength, fine motor co- ordination, quality of life and running speed and endurance, will be tested at the start and at the end of the 12-month trial. Quote Link to comment Share on other sites More sharing options...
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