Jude Grainger, 2, suffers rare condition Smith Magenis Syndrome. Only 600 people in world have it.
Jude Grainger, 2, suffers rare condition Smith Magenis Syndrome. Only 600 people in world have it.

AN ILKESTON dad has launched a fundraising bid to boost awareness of a rare condition that affects his toddler son Jude - one of only 600 people worldwide suffering from it.

Jude Grainger, two, was diagnosed with Smith Magenis Syndrome when he was 18 months old.

His dad, Dez, told the Advertiser: “Jude was born seven weeks early and we knew something wasn’t right soon after.

“He spent his first Christmas in hospital and we found out on Christmas Day that he had epilepsy but we still thought there was something wrong.

“We thought it was down to other things and we knew he’d had a bleed on the brain but he carried on having tests.

“Tests came back saying that he had Smith Magenis Syndrome and the neurologist was as baffled as we were. It’s so rare even he’d never come across it.”

The condition is caused by a defect in chromosome 17 and causes behavioural problems and some sufferers struggle with speech and mobility.

Dez said: “Jude isn’t talking yet and he might not until he’s quite a bit older, he sometimes hits his head on things and he’ll do things like bite the table and scratch things.

“Every day he’s different, lately he’s started crying when we’re out in the car and then we stop, but as soon as I start driving again he’s fine.

“It’s frustrating sometimes because you don’t know what to do for the best.”

Dez and his wife Laurie, who have six other children, Jude is the youngest and their eldest is 15 years old, have sought support from other parents of children with the condition by befriending them on social networking sites.

Dez said: “People call Facebook but it’s helped us find other families in our situation and it’s meant we’ve been able to talk to people who understand everything we’re going through.

“It is a struggle sometimes, if Jude had been diagnosed with Downs Syndrome then people would have heard of it and know about it but with this people haven’t and they don’t get it.”

On Sunday Jude sounded the starting gun for 41 of his family and friends to walk from Ilkeston’s Market Place to Elvaston Castle.

The group carried a teddy bear that is being passed from family to family and helping to raise cash for the Smith Magenis Foundation.

The Graingers’ sponsorship efforts totalled £1,300.

Dez said: “We wanted to do our bit and the whole family was involved apart from Jude and our five-year-old.

“All of the kids are really good with Jude and really supportive of the charity too.”

After the success of this year’s fundraising Dez is already planning next year’s effort, an epic walk from Ilkeston to Skegness.

He said: “We read in the Advertiser actually about people biking it so we thought why not go one further and walk it. “Me and my son and a couple of others have already said we’ll do it so that’s our next challenge.”