Suffolk boy joins trailblazing medical trial into rare genetic condition
Rob Setchell visited Jack and his family to learn more about his treatment
An eight-year-old boy has become one of the first people in the world to be treated for the rare genetic condition he suffers from.
Jack Wright, from Kirton, near Ipswich, is one of just a few people in the UK with Pelizaeus-Merzbacher Disease (PMD) - a neurological condition affecting the central nervous system.
It impacts his speech and sight and has left him unable to walk without help.
Jack was diagnosed with PMD as a toddler. The disease rarely affects women, so his mum Sian didn't know she was a carrier.
"It comes with an awful lot of guilt on my part because it's something we had no control over," she told ITV News Anglia.
"Everything that Jack has to go through I feel guilty for because I'm the carrier, even though I didn't know."
Last year Jack was accepted on to a medical trial in Amsterdam investigating potential treatments.
Over three years, he will take regular trips there to have medication injected into his spinal cord - a bid to stop the disease progressing.
Mrs Wright said: "Jack is only the third person in the world to have the medication so it's all very new.
"We're not expecting to see any type of results for six months at least but any type of improvement we'd be happy with.
"Any way we can help Jack, we're doing it. We'll try anything."
Jack's family and friends have raised thousands of pounds to help make his life easier, with some used to fund a physiotherapy room at his home.
A passionate Ipswich Town fan, the youngster also loves dressing up.
On one flight to Amsterdam for treatment he donned a Batman costume, convincing his dad Carl to go as Robin.
"He's a happy lad," said Carl. "He just loves life. Nothing fazes him.
"I think that spurs us on to give him the best life he can have - and that's what we'll do."
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