Mikaere was born October 2016. An hour after birth his breathing was shallow, and his limbs were floppy, like a rag dolls. He was whisked up to NICU and his oxygen needs escalated. From nasal prongs, to C-PAP to ventilation. Within a few days he was in a seizure coma, had lost all his baby reflexes. He hadn’t cried, opened his eyes, or fed.
It took eleven days to diagnose Nonketotic Hyperglycinemia (NKH). Despite the grim prognosis (early death, severe intellectual and physical disability, seizures) and a six week stay on end of life care in Hospice, Mikaere recently celebrated his third birthday (take that, nay-saying doctors!)
He’s achieved milestones not thought possible, enjoys music, drums and dancing fruit. He is very vocal and is able to communicate his needs (despite being nonverbal), he’s very social and likes to be busy. He prefers Banana Pudding over Chocolate, bubbles over sensory play and bells over anything else. He’s likes swimming and is due to start nursery in a few months.
While it hasn’t all been roses (the special needs path is not an easy one) Mikaere is well loved, and brings an incredible amount of joy to his family and friends.
Team Mikaere actively supports Joseph’s Goal in fundraising for a gene therapy cure, and has raised over £170,000 in support of Prof. Nick Greene in the UK.
Follow #TeamMikaere on Instagram
#TeamMikaere on Facebook
#TeamMikaere on JustGiving
Elly (Mikaeres Mum) wrote a children’s book: Eva the Adventurer.
Available on Amazon in over 20 languages, all proceeds go to NKH Research.