My 11-year-old son has Benjamin Button disease: he is aging backwards and could die ‘at any moment’

An 11-year-old Yorkshire schoolboy has been diagnosed with an extremely rare, fatal disease that is causing him to age and gradually lose the ability to walk, talk and move.

Jayden Skidmore, 11, was diagnosed with Duchenne muscular dystrophy, a genetic condition that weakens the skeletal and heart muscles, at age five.

Just two years after diagnosis, he was unable to walk due to muscle weakness in his legs.

Doctors give him only ten years to live and say he could develop serious heart problems as he gets older.

The life expectancy of a child with Duchenne muscular dystrophy is 22 years, but 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 thinks he developed motor problems between the ages of three and five.

“He couldn’t walk very well,” she said. “When he turned four, he kept falling down, all the time. We were so worried.”

Sean and Jade took the toddler to a child development specialist, who performed a blood test on him.

In September 2018, when Jayden was six, the results came in.

Levels of a signature protein called creatine were nearly 10 times higher than in a healthy person, indicating a serious problem.

This, together with his symptoms, was enough to diagnose him with Duchenne muscular dystrophy.

Jade underwent a genetic blood test that same month, which revealed that she had unknowingly passed the gene on to Jayden.

“I blamed myself,” she said. “But it is what it is — we couldn’t possibly have known.”

Since Jayden was diagnosed, he has not been able to walk at all.

He takes daily steroids for his muscles and heart medications for his weakened cardiovascular system.

Jade said: ‘He used to be able to play football, run and do other things. But now he’s just in a wheelchair, full-time. Deterioration usually starts in the legs and then spreads through the body.

We’ve been told he can go at any age.’

Going on vacation to Florida has always been Jayden’s dream. Sean, a job insulation worker, is raising as much money as he can to get him there in October 2025.

He says it will cost between £7,000 and £10,000 to fly all three over, plus another £1,000 to £2,000 in spending money.

To achieve this, he is taking on an ‘extremely demanding’ physical challenge and is hoping for sponsors.

“At the end of the day, Jayden can’t do any of this, so I have no excuse,” he said.

‘I’m going to climb three mountain peaks, multiple times.

‘I have to run laps and swim a lot. I really want to get as much done as possible in a 24-hour period.

“I’ll be thinking of Jayden as I take on the challenge. He’s a huge motivator.”

The family plans to take Jayden swimming with dolphins in Florida, as well as go scuba diving and rock climbing.

But their main goal is to get him to meet ‘The Rock’.

Sean said, “Jayden may not be around much longer, and I know this would be his dream.”

Approximately 100 babies are diagnosed with Duchenne muscular dystrophy each year, the vast majority of whom are newborn boys.

Patients with dystrophin have a deficiency of the protein dystrophin, which causes muscle fibers to be broken down and replaced by fibrous and/or fatty tissue. This causes the muscles to gradually weaken.

Steroids can help maintain muscle strength and function for a period of time, but at some point they stop working and patients lose control of their bodies.

Many experimental drugs that are thought to be able to slow the progression of the disease are currently in clinical trials.