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Hi, I’m Nash, and I’ve got a rare syndrome. I need your help.

Cause page created in the Kiwi Kids category by Lucinda, Sonja & Therese Gulliver for "Nash Jones"

  • $15,634.00 donated
  • 199 generous donors

I’ll need lots of looking after all my life. Funds will go towards helping my parents with the extra costs of that

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Hi, I’m Nash, and I’ve got a rare syndrome. I’ll need lots of looking after all my life. My cool-fun aunties set up this page in case you wanted to help.

I’m only little but I’m pretty special coz I’m the only person in New Zealand with Lesch-Nyhan syndrome. It means I’m sometimes a bit sore, and it can be hard to move properly or learn new stuff. But that’s OK coz I’ve got lots of family and friends around me who love me heaps.

#weloveuNash

Our precious nephew Nash was diagnosed with Lesch-Nyhan Syndrome (LNS) in March 2018. This heart-breaking condition means it’s unlikely he’ll ever walk, he’ll have developmental delays and the neurological and behavioural abnormalities he could experience include self-injury (biting and head-banging), muscle tensing and flailing limbs. He may never learn how to talk properly too. We desperately want to help him and his family minimise the financial burden of this devastating condition as he is already requiring a lot of medical attention which is quite disruptive on their ability to maintain a balanced work and family routine.

We are unsure as to the extent LNS will affect his quality of life. Nash is already over-producing uric acid, which is a symptom of LNS, and this could ultimately lead to renal failure in the future due to a build-up of calcium in the kidneys. We have been told that children with LNS have a life expectancy that doesn't often extend beyond their twenties. For all that time we know he will require 24/7 care.

Nash and his family have had a rough time of late, spending almost a month up in Starship Hospital in Auckland and Nash undergoing three different surgeries. Nash developed a large number of kidney stones in his left kidney and was flown up to Starship hospital for surgery to remove them. The surgery went well and they removed SEVEN kidney stones that were severely affecting the function of his left kidney. Nash went back home after two weeks in hospital, but unfortunately, after only a few days at home, he developed a high fever due to an internal infection. Nash was once again flown up to Starship hospital to undergo two additional surgeries. Firstly, doctors removed the stent from the previous surgery and at the same time inserted a central line so that they could administer IV antibiotics to get the infection under control. Then, a week later, Nash had his third surgery (three within a month!) to administer a gastrostomy tube to enable him to be fed directly to his stomach so he can more easily get the nutrients and fluids required.

Nash is a beautiful, angelic little boy with a smile that lights up the room. He has a big sister Jess (9) and brother Quinn (2) and they love him heaps! He is the gorgeous son of Francine and Nathan.

The news has been a huge shock for Francine and Nathan and all of their extended family and friends. We want to bring together Nash’s support community and those who feel compelled to help the family during this difficult time.

We love this family so much and want nothing more than for Nash to have the most amazing life possible, and for the family to have super special experiences.

One-off or regular donations will help to cover the extra costs that will be incurred to fully care for Nash now and in the long-term future.

Thanks so much for your support.

For more information about Lesch-Nyhan syndrome you can visit:

http://www.lesch-nyhan.org/en

https://www.facebook.com/groups/106039789454449/

Funds will be for expenses they may experience in order to care for Nash in the future, e.g wheelchair/s, doctors visits, medical and dental treatments, potential house renovations and a suitable disability vehicle, travel requirements to see specialists

Page created by:

Lucinda, Sonja & Therese Gulliver

Individual
Taranaki

We are Nash's aunties and we want him to have the best and most awesome chance at life, this is a way we can help the whole family to ensure he and they have the best care possible.

All funds raised benefit:

Nash Jones

Funds will be paid to a verified bank account of FRANCINE GULLIVER on behalf of Nash Jones.

  • $15,634.00 donated
  • 199 generous donors

$15,634 donated

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This cause page was created on 08 May 2018 and closes at 11:59 NZST (UTC +12:00) on 11 May 2020.

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