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

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

UPDATE: 07 December 2018 – Stem Cell Transplant possibilities

Nash’s family have been exploring the potential of a stem cell transplant which could have a high chance of stopping the self-harming behaviours and further neurological damage that is associated with LNS. It could provide Nash with a quality of life that many of the children with LNS are unable to experience.

Currently, stem cell transplants for children diagnosed with LNS are unable to be undertaken in New Zealand. A medical team from a university in North Carolina have performed the stem cell transplant on four LNS children with positive results. If Nash was to be accepted to undergo the stem cell treatment it would mean his family would need to relocate to the U.S for a year as well as raise $1.7 million USD for payment of the treatment. Additional funds will also need to be raised for the living costs associated with relocating for a year.

So far Nash’s journey has been heartbreaking for everyone in his life:

June 2017 - Trouble with feeding and weight gain from birth

Sept 2017 - Developmental delays becoming evident

Mar 2018 - Suspected LNS candidate. Torturous 3 week wait for test results. LNS confirmed.

22 June 2018 - Surgery #1: Severe pain leads to open surgery at Starship hospital – 7 kidney stones removed

2 July 2018 - Surgery #2: Fever and suspected infection – stent removed and main IV line for antibiotics inserted

6 July 2018 - Ultrasound scan reveals another kidney stone

11 July 2018 - Surgery #3: Gastrostomy tube inserted

October 2018 - Nash admitted to hospital for a week having episodes of undiagnosable pain

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 currently over-produces 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 if it is not managed properly. 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 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/