An 11 year-old Yorkshire schoolboy has been diagnosed with an ultra-rare, fatal disease than sees him age backwards – and gradually lose the ability to walk, talk and move.
Jayden Skidmore, 11, was diagnosed with Duchenne’s muscular dystrophy – a genetic condition that weakens the skeletal and heart muscles – at the age of five.
Just two years after diagnosis, he stopped being able to walk – due to muscle weakness in his legs.
Doctors have now given him a decade left to live, and told he may have significant heart problems as he gets older.
Jayden Skidmore began struggling to walk aged three, and by four could not stay go far without falling over
Within five years, Jayden could not get around without the use of a wheelchair
The life expectancy for a child with Duchenne’s is 22 years, but mum Jade Skidmore, 33, and stepdad, Sean Dudley, 35, worry he won’t live to see 20.
Jade – who cares for Jayden full-time – says she had a ‘normal’ pregnancy with her son, and thought everything was fine when he hit his early milestones, like crawling and walking.
Looking back, she believes he started having problems with his motor skills between the ages of three to five.
‘He couldn’t walk properly,’ she said. ‘When he got to four, he just kept falling over, all the time. We were so worried.’
Sean and Jade took the toddler to see a child development specialist, who gave him a blood test.
In September 2018, when Jayden was six, the results came back.
Jayden’s lifetime wish is to be able to meet actor and former wrestler, The Rock. The family are planning to raise cash for a trip to Florida to help him achieve his dreams
Duchenne’s muscular dystrophy affects just 100 new babies every year
Levels of a telltale protein called creatine were almost 10 times the amount of a healthy person, indicating a serious problem.
This, as well as his symptoms, were enough to get him a diagnosis of Duchenne’s muscular dystrophy.
Jade had a genetic blood test in the same month, which confirmed she’d unknowingly passed the gene down to Jayden.
‘I blamed myself,’ she said. ‘But, it is what it is – there’s no way we could’ve known.’
In the years since his diagnosis, Jayden has completely lost the ability to walk.
He takes daily steroids for his muscles, and heart medication for his weakened cardiovascular system.
Jade said: ‘He used to be able to play football, run and do little bits. But now he’s just in a wheelchair, full-time. Deterioration usually starts with the legs, then travels up the body.
We’ve been told he could go at any age.’
Jayden’s stepdad Sean plans to raise £10,000 to fund a once-in-a-lifetime trip for the schoolboy
Going on holiday to Florida has always been Jayden’s dream – and Sean, a track isolation operative, is raising as much money as he can to get him there, in October 2025.
He says it’ll cost between £7k to £10k just to fly the three of them over – plus another £1k to £2k in spending money.
To do this, he’s taking on an ‘extremely demanding’ physical challenge and hoping for sponsors.
‘At the end of the day, Jayden can’t do any of this, so I’ve got no excuse,’ he said.
‘I’m doing three mountain peaks, multiple times.
‘There are laps I have to run, and lots of swimming – it’s basically to get as much done as I can in a 24-hour period.
The life expectancy for a child with Duchenne’s is 22 years, but many patients don’t live to see their 20th birthday
‘I’ll be thinking about Jayden when I’m doing the challenge – he’s a huge motivator.’
The family plan to take Jayden swimming with dolphins in Florida, as well as scuba diving and adapted rock climbing.
But, their main aim is to get him to meet ‘The Rock.’
Sean said: ‘Jayden may not be around for much longer, and I know this would be his dream.’
Some 100 babies with Duchenne muscular dystrophy every year – with the vast majority of those affected newborn boys.
Sufferers have a lack of dystrophin protein, which causes muscle fibres to break down and are replaced by fibrous and or fatty tissue causing the muscle to weaken gradually.
While steroids can help to maintain the muscle strength and function over a certain period of time, they eventually stop working, and patients lose control of their body.
Many experimental medicines thought to be effective for slowing the progression of the disease are currently undergoing clinical trials.
