Fundraising for Nash Jones
WHY WE’RE DOING THIS
Nash Jones has a rare syndrome called Lesch-Nyhan Syndrome and is now just under 2 years old.
He currently is the only person in New Zealand with it and that means his parents Francine and Nathan Jones will need all the help they can get 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.
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 is accepted to undergo the stem cell treatment it means his family will 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.
WHAT WE’RE DOING
Recently we held a movie night at The Roxy Cinema showing The Avengers - Endgame, all money raised has gone to help Nash. We are continuing to help raise money for Nash, so keep an eye out for future fundraising events.
USE OF FUNDS RAISED
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.
To help Nash reach his goal, please visit his give a little page.