Fight Against Lesch-Nyhan Syndrome: Nash's Story

Nash Jones is a five-year-old boy from Taranaki with a rare genetic condition called Lesch-Nyhan Syndrome. Nash’s body cannot process uric acid, which means he constantly needs to take on water, day and night, to flush his kidneys and prevent the build-up of kidney stones. One of the most confronting symptoms of Lesch-Nyhan is the compulsion of sufferers to self-harm. His parents Fran and Nathan, and his older brother and sister are always on alert to ensure Nash is kept out of harm’s way. Despite needing constant care, his family, and the local community, work hard to ensure that Nash gets to live as full a life as he can. He goes to kindergarten and attends Conductive Education, which is a learning process aimed at children with disabilities. Nash loves fishing, hanging out on the trampoline with his family and go-karting. His dad Nathan believes that Nash’s life is testament to the fact it takes a village to raise a child, especially so when that child has a disability.



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