A mum ‘blamed herself’ after she was told her ‘son will age backwards and become baby-like’ due to a rare condition.
At five-years-old, Jayden Skidmore, 11, was diagnosed with Duchenne’s muscular dystrophy – a condition that weakens the skeletal and heart muscles.
And by the age of seven, he could no longer walk due to muscle weakness in his legs. While the life expectancy for a child with this condition is 22 years, his mum, Jade, and stepdad, Sean, worry he won’t make it to 20.
Jade cares for her son full-time and explained she had a ‘normal’ pregnancy and thought everything was fine when he hit early milestones like crawling and walking.
But looking back, she thinks he started having problems with his motor skills between the ages of three and five.
“He couldn’t walk properly,” the mum said. “When he got to four, he just kept falling over, all the time. We were so worried.”
The couple decided to take Jayden to see a child development specialist, with the results of a blood test in September 2018 finding his creatine levels were at 1600 units-per-litre.
It was explained the normal level was supposed to be in the ‘hundreds’. Along with his symptoms, it was enough to diagnose the youngster with Duchenne’s muscular dystrophy.
That same month, Jade had a genetic blood test, which confirmed she’d unknowingly passed down the gene to her son.
“I just thought it was my fault,” she said. “I really blamed myself.
“But it is what it is – there’s no way we could’ve known.”
No longer able to walk, Jayden takes daily steroids for his muscles, and heart medication for his weakened cardiovascular system. He’s been given a decade left to live and has been told he might have significant heart problems as he does get older.
“Deterioration usually starts with the legs, then travels up the body,” Jade added.
“We’ve been told he could go at any age.”
The family are now hoping to take Jayden on a ‘trip of a lifetime’ to Florida in the states, where they hope he can also meet his hero, Dwayne ‘The Rock’ Johnson.
Sean is taking on one of the ‘world’s toughest challenges’ (involving rock climbing, swimming and sprinting) to help raise funds.
“Time is of the essence – we want Jayden to live the best life he can, while he’s still here,” he said.
With Sean preparing for the ‘extremely demanding’ physical challenge to fundraise for the big trip, the young lad is a ‘huge motivator’ for him.
The family are hoping to take him swimming with dolphins as well as scuba diving and adapted rock climbing in Florida. But meeting the Rock really is the big hope.
Sean said: “It only takes one person in his circle to flag it up to him.
“I just want to get the word out there, as much as possible. Jayden may not be around for much longer, and I know this would be his dream.”