An 11-year-old Yorkshire schoolboy has been diagnosed with an extremely rare and fatal disease that causes him to age backwards and gradually lose the ability to walk, talk and move.
Jayden Skidmore, 11, was diagnosed with Duchenne muscular dystrophy, a genetic disease that weakens skeletal and heart muscles, at the age of five.
Just two years after diagnosis, he was unable to walk due to muscle weakness in his legs.
Doctors have now given him a decade to live and have told him he could have major heart problems as he ages.
Jayden Skidmore began having difficulty walking at age three and by age four could no longer walk very far without falling.
Within five years, Jayden was unable to move without the use of a wheelchair.
The life expectancy for a boy with Duchenne is 22 years, but his mother, Jade Skidmore, 33, and stepfather, Sean Dudley, 35, fear he may not make it to 20.
Jade, who cares for Jayden full-time, says she had a “normal” pregnancy with her son and thought everything was fine when he reached his first milestones, such as crawling and walking.
Looking back, she believes she began having problems with her motor skills between the ages of three and five.
“He couldn’t walk properly,” she said. “When he was four, he was falling all the time. We were very worried.”
Sean and Jade took the boy to see a child development specialist, who performed blood tests.
In September 2018, when Jayden was six, the results came in.
Jayden’s lifelong wish is to meet actor and former wrestler The Rock. The family is planning to raise money for a trip to Florida to help him achieve his dreams.
Duchenne muscular dystrophy affects only 100 new babies each year
Levels of a telltale protein called creatine were nearly 10 times higher than in a healthy person, indicating a serious problem.
This, along with his symptoms, were enough for him to be diagnosed with Duchenne muscular dystrophy.
Jade had a genetic blood test done that same month, which confirmed that she had unknowingly passed the gene on to Jayden.
“I blamed myself,” she said. “But it is what it is, there was no way we could have known.”
In the years since his diagnosis, Jayden has completely lost the ability to walk.
He takes steroids daily for his muscles and heart medication due to his weakened cardiovascular system.
Jade said:I used to be able to play football, run and do little things. But now he is in a wheelchair all the time. The deterioration usually starts in the legs and then spreads to the rest of the body.
We were told he could leave 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 vacation to Florida has always been Jayden’s dream, and Sean, a runway isolation operative, is raising all the money he can to get him there, in October 2025.
He says it will cost between £7,000 and £10,000 just to bring the three over, plus an additional £1,000 to £2,000 in expenses.
To do so, he faces an “extremely demanding” physical challenge and hopes to find sponsors.
“At the end of the day, Jayden can’t do any of this, so I have no excuse,” he said.
‘I’m doing three mountain peaks, several times.
‘There are laps I have to run and a lot of swimming – it’s basically about doing as much as I can in a 24-hour period.
The life expectancy of a child with Duchenne is 22 years, but many patients do not live to see their 20th birthday.
“I will think of Jayden when I do the challenge – he is a great motivator.”
The family plans to take Jayden swimming with dolphins in Florida, as well as scuba diving and adaptive rock climbing.
But his main goal is to get her to meet ‘The Rock’.
Sean said: ‘Jayden may not be around for much longer, and I know this would be his dream.’
Each year, about 100 babies are affected by Duchenne muscular dystrophy, and the vast majority of them are newborn boys.
Patients have a lack of the protein dystrophin, which causes muscle fibers to break down and be replaced by fibrous and/or fatty tissue, causing the muscle to gradually weaken.
While steroids can help maintain muscle strength and function for a period of time, they eventually stop working and patients lose control of their bodies.
Many experimental drugs that are considered effective in slowing disease progression are currently undergoing clinical trials.
