Baby's condition is 'as rare as winning lottery'

Parents of a baby with a rare condition say they are determined to make their child's life as positive as possible while they still can.

Otto, who is six months old, has Krabbe Leukodystrophy and has been given a year to live.

His mum, Ella, 27, from Hull, said: "Doctors told us we had more chance of winning the lottery than our baby having this condition."

Friends have been fundraising for the family, including completing a 24-hour DJ challenge and running more than 200 miles in two days.

Krabbe Leukodystrophy is a rare, inherited condition that damages the nervous system.

It typically appears within the first six months of life. Babies suffer with extreme irritability, developmental regression, severe muscle spasms, feeding difficulties, and vision or hearing loss.

Otto's dad, Kieron, 30, from Hull, said: "It's been one of the hardest experiences that we've genuinely ever come across.

"People were always telling us, 'your baby's going to cry and you're not going to get any sleep when the baby's born'.

"So we passed it off as that for the first six weeks, but we knew something was different because he would cry for six hours straight."

Kieron said it took three months to get a diagnosis after they had changed Otto's milk about eight times and he had more than a dozen blood tests.

Ella added: "He's lost his ability to drink orally. He's losing his sight and his hearing and all of his motor functions have gone, so he doesn't really kick or move and he's just mentally regressed completely.

"It's just so unfortunate that me and Kieron have met and we have both got this gene that unfortunately created it."

When Otto was diagnosed with the condition, Ella said it was difficult to research it due to the lack of information online.

"Spreading awareness means everything to us because when we were trying to search his symptoms, nothing was coming up," she said.

On Sunday, Danny Williams, a friend of the family, performed a 24-hour DJ challenge in Bridlington.

Williams said the money raised at the event was going towards "whatever the family want to spend it on".

He said: "We're just doing everything we can to try and make it better for the family. We can't take it away but we can at least try and make it a little bit better.

"The time is precious. What's important is making memories with their little boy."

The way friends and family have rallied in support has been a comfort to Otto's parents.

Keiron said: "I have always been a positive person, but once I received the news, it was heartbreaking and I went into a deep hole. But then seeing everyone do all this, I've been riding such a high.

"I haven't really had time to think of the worst things because people are doing the best that they can. All I'm seeing is the best side of life. It's really, really magical."

Listen to highlights from Hull and East Yorkshire on BBC Sounds, watch the latest episode of Look North.

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