Their lives revolve around keeping their 5 year old son Nash safe and alive. Nash has Lesch-Nyhan syndrome. Nash’s body can’t process uric acid, which often results in this little boy experiencing painful kidney stones. He also has Cerebral Palsy and Global Developmental Delay and has limited control over the movements of his body. He has limited communication and understandably experiences frustration.
When most parents were deciding what primary school to send their son to and what food to put in the lunchbox, the Joneses were making the heartbreaking decision to remove all of Nash’s teeth to prevent him self-harming. This is a symptom of his condition.
Fed through a tube in his stomach and transported in an electric wheelchair, Nash requires significant 1:1 care, which his parents share. Their faces light up when they talk of the joy that Nash brings them.
Lesch-Nyhan syndrome is rare. Nash is one of few known cases in NZ.
Nathan and Fran have been told their son may only live to his early teens. This drives their daily commitment to their son.“We don’t know how long we’ve got him for, so we’re just trying to live the best life that we can,” says Fran. Despite the intense workload, the family focus every day on giving Nash as many positive life experiences as possible.
In an Attitude documentary, Nathan and Fran open their home and give us all an idea of what life is like for them, raising a child with a rare condition, alongside their other children. They work hard to keep the family together. They’ve modified their home to be wheelchair accessible. Dad Nathan, a keen fisherman, has gone a step further and adapted a boat to be able to share his passion with Nash. Along with two older siblings, the family enjoy time on the water whenever they can. Nash uses a modified electric reel that gives him control and allows him to haul in fish at the push of a button. When we see Nash floating effortlessly in a warm spa pool on the back deck, supported by his mum Fran, it’s clear that the family are giving this boy the best life they can. He’s happy. Nathan and Fran acknowledge they haven’t come this far alone. Support from family and community has been invaluable.
A remarkable Kiwi family who have embraced an unimaginably difficult situation but are resolved to give their son and brother Nash the life he deserves.
The new season of Attitude began with Nash’s story on TV1 - Sunday 9th of April.
Episode 1 is now on demand at www.attitudelive.com and the Attitude Youtube channel.
