Warning: trim() expects parameter 1 to be string, array given in /var/sites/n/nkh-network.org/public_html/wp-includes/class-wp-query.php on line 777
NKH International Family Network

Meet Mikaere

Mikaere Hulance + Family

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 Blog
#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.

Meet Arthur

Arthur Bace + Family

Arthur was born on the 12th of March 2017. His parents, Charlene and Ashley were over the moon to introduce Arthur to his big sister Ellie.

Two days after birth, now at home, Charlene and Ashley noticed Arthur didn’t open his eyes. He’d never cried, was extremely floppy and didn’t move his limbs. After voicing their concerns, Arthur was admitted to hospital and ventilated due to rising CO2 levels.

After 10 agonising days, many tests (including a lumbar puncture and an MRI scan) Arthur was diagnosed with Nonketotic Hyperglycinemia (NKH). This was unheard of, and a complete shock to his parents.

With the support of the doctors at Gloucester Royal Hospital, his parents made the decision to remove Arthur’s oxygen tube and let the little man fight, and he did!

Arthur continued to beat the odds, celebrating his 2nd birthday in March 2019 and going on a family holiday to Disneyland Paris. Sadly, two weeks after returning from this holiday Arthur began to deteriorate. He was transferred to Acorns Children’s Hospice where, on the 2nd of May (NKH Awareness Day), Arthur passed away in his Daddy’s arms.

At the moment there are some medications used to treat NKH, but they are very harsh on tiny bodies and don’t work in all cases. Arthurs family and close friends are now working hard to help fund research into NKH and hope this will enable a cure to found for this genetic condition.

Follow Arthur on Facebook
Arthurs Just Giving Page
Arthur on Twitter
Gloucester Live Articles about Arthur