More information at www.teammikaere.com
Also Elly is blogging at: www.teammikaere.com/blog, and on instagram @teammikaere

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Our little guy Mikaere was born with Nonketotic Hyperglycinemia (NKH). It’s a rare metabolic disorder with no cure and limited treatment options. It's also terminal, and Mikaere is on palliative care. 

It's been a very rough time we're so grateful for the support and kindness we've received. Living with NKH is not easy - even more so with the global pandemic. We’ve been shielding and in isolating since March 2020 as Kai is CEV (we only leave home for medical reasons, and can count on one hand the number of times we’ve left the house in the last year). 

We live with seizures, medication, suction machines and sat monitors. With hoists and specialist seating equipment and wheelchairs. We live with the anxiety of what might happen if Mikaere got covid, and we do everything we can that might improve his quality of life. 

His initial year of life was spent in and out of the NICU and PICU, and Hospice. We're currently at home, and are navigating the ins and outs of all the hospital visits, medications and therapy, trying to manage the seizures while still giving him the best chance we can. We work hard to make him smile, to bring him joy. We're 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.

We support Joseph’s Goal as they're UK’s only NKH charity. Their donations help fund research with Prof 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!