More information at www.teammikaere.com
Also Elly is blogging at: www.rarg.co.nz, and on instagram @ellyrarg
Our little guy Mikaere 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 four months - it's been a really rough time (in and out of the NICU and PICU, and Hospice) but we're navigating the ins and outs of all the hospital visits and medications, loving every moment we have with him.
So many people have asked how they can help, and without a doubt we say fundraising for research. We know a cure is a while off and a long shot but we live in hope. 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 Kai's future, every pound brings his future forward into the realm of possibility.
So, if you could help us raise money, even a small amount would be very much appreciated. £20 from a bake sale at your work. Or a £15 from a curry night. A poker night with a £10 buy in, £5 for the pot, £5 for charity.
Run a raffle. Run a marathon. Sell some of your old clothes on ebay. Do a sausage sizzle. Talk to your HR person about making an NKH charity your office charity of the year. Help us. Please help us raise money to research. Our guys future depends on it.
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 love you guys!