‘It would give our children a future’: Mother organises fundraising challenge in fight to cure son’s rare terminal disorder

A mother has organised a 100-mile challenge in her fight to fund a cure for her son’s rare terminal disorder.

Elly Hulance, 40, of York Road, Battersea, has set up a virtual walking challenge across July to raise money for Nonketotic Hyperglycinemia (NKH) – a rare and terminal metabolic disorder which her son, Mikaere, was diagnosed with just 11 days after birth.

Mrs Hulance said: “An hour after birth he wouldn’t wake up. Two days later he still hadn’t opened his eyes or cried.

“On the third day he was taken to intensive care because he lost the ability to breathe, which was terrifying. We were told to prepare ourselves to say goodbye.

“After he was diagnosed with NKH he was given medication. He opened his eyes for the first time and came off the ventilator.”

Children with NKH are unable to process the amino acid glycine, which is a neurotransmitter. This causes significant brain damage and severe disability. 

About 80 per cent of children diagnosed with NKH are not expected to see their first birthday, and of the 20 per cent that survive, the average age of death is thought to be around three to five years old. 

Mikaere is now seven years old, but he has seizures every day and is severely disabled.

Mrs Hulance said: “He’s non-verbal and eats through a tube. He cannot stand, sit or move independently.”

Despite the severity of his condition, Ms Hulance said her son’s “cheeky character” and “real sense of humour” shines through.

She said: “He lets himself be known! There’s a physiotherapist he doesn’t like and every time she comes in he pretends to go to sleep then opens one eye when he thinks she’s gone.

“They play games where she pretends to leave and he will wake up and laugh when she is still in the room because he has been caught out.

“It’s a very sweet interaction. His personality is not something people would associate with someone with his disability.”

NKH is rare, with fewer than 50 children living with the condition in the UK and fewer than 500 in the world. 

University College London has been developing novel gene therapy for NKH, but the tests have not developed into a clinical trial.

Mrs Hulance said: “We’ve been told the only thing in the way for the clinical trial is money.

“I’m desperate for a cure and have done so many fundraisers. I jumped out of a plane skydiving last month, I’ve written books to sell on Amazon, I’ve done bake sales.”

Mrs Hulance hopes her latest fundraising plan will help to generate more funds. Anyone can take part in the 100 mile challenge by downloading the My Virtual Mission app.

The 100 miles – which can be walked, cycled or swam – can be broken down into shorter distances each day throughout July.

Mrs Hulance said: “If people can do a small amount each day, together we can make a difference.”

Finding a cure would be “life changing”, Mrs Hulance said.

She said: “It would be a life without pain and give our children a chance at a future. It would give us a life without having to grieve for our children.”

Despite Mikaere reaching seven years old, Mrs Hulance said she is constantly anticipating his death.

She said: “Just last week he nearly died. He had too many seizures and the medication they gave him in hospital made his airways collapse.

“Every birthday, every milestone, I think is going to be his last.

“A cure would save lives and families.”

To join the challenge, or to donate, visit http://nkhcharityrun.com

Pictured top: Sam Hulance and Elly Hulance with their three children (Picture: Elly Hulance)