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Elly Gedye avatar
Elly Gedye

Mikaere + Finding an NKH Cure

Fundraising for Joseph's Goal

100 %
£8,000.65
raised of £8,000 target
by 193 supporters
Donate
  • Event: Christmas with Mikaere

Joseph's Goal

Joseph Michael Kendrick is 7 years old and has Non-Ketotic Hyperglycinemia, a rare genetic disorder that affects one in 60,000 new-borns. The condition is so serious that less than 500 people in the world are living with it. Joseph’s Goal has been set up to raise funds and awareness into NKH.

Story

Our little guy was born with Nonketotic Hyperglycinemia. It’s a rare metabolic disorder with no cure and limited treatment options.

We've been so grateful for the support we've received over the last two months - it's been a really rough time, but we're out of the NICU + at home!  We're navigating the ins and outs of all the hospital visits and medications, loving every moment we have with him.

To celebrate his first Christmas we’re raising funds for research. Because there are so few NKH research projects 
every pound we raise has a tangible effect on the research that can be done. Because of this every pound we raise will have a direct affect on Mikaere's future. 

We support Joseph’s Goal as they're UK’s only NKH charity. Their donations help fund research with Dr Nick Greene at UCL/Great Ormond St Hospital - Nick + Elly have been emailing and, in the next stage of research Mikaere's DNA may be used as part of a case study. 

Again, thank you to everyone for the love and support. We couldn't have made it through this time without you. We love you. Merry Christmas! x

PS - Updates available at rarg.co.nz and on instagram - instagram.com/ellyrarg. Send a follow request! x

Photos

14
  • A few days after birth, with CPAP. Cuddles with Sam!
  • Mikaere with all his monitoring equipment in the NICU +12

Supporters

193