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