My son Kai has Nonketotic Hyperglycinemia, a rare and terminal genetic disorder. We've spent months in hospital and hospice, and were told it was unlikely Kai would make his first birthday.
Kai is now 10 months old, suffers profound developmental delay, seizures and hypotonia. He has medications every 6 hours and medical appointments/therapy everyday.
We've spent a lot of time fundraising for a cure - Prof. Nick Greene at UCL is looking at gene therapy for NKH and we're hopeful he'll find a treatment that works. Through small fundraisers like a wine tasting held in Putney last month we've accumulated over £25k for NKH research.
Site: teammikaere.com
Instagram @teammikaere
Article supplied by Elly Gedye
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