A MUM spotted signs of her son’s rare genetic disease after noticing he “kept falling over all the time”.
Jade Skidmore, 33, had a “normal” pregnancy with her tot Jayden and thought everything was fine as he hit his early milestones, like crawling and walking.
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But between the ages of three and five, she started noticing Jayden – now 11 – was having problems with his motor skills.
Jade said: “He couldn’t walk properly.
“When he got to four, he just kept falling over, all the time.
“We were so worried.”
Read more on rare conditions
Jade and stepdad, Sean Dudley, 35, took the tot to see a child development specialist who gave him a blood tests to check levels of creatine kinase, a protein usually found in muscle fibres
In September 2018, the results came back – Jayden’s creatine levels were at 1600 units-per-litre, and he was told the normal level was supposed to be in the “hundreds.”
High levels of creatine in the blood can be a marker of muscle damage caused by some diseases.
Jayden was diagnosed with Duchenne’s muscular dystrophy – a condition that weakens the skeletal and heart muscles – at the age of five.
Jade had a genetic blood test in the same month, which confirmed she’d unknowingly passed the gene for the disease down to Jayden.
“I just thought it was my fault,” she recalled.
“I really blamed myself.
“But, it is what it is – there’s no way we could’ve known.”
The life expectancy for a child with Duchenne’s is 22 years, but Jade Sean worry Jayden won’t live to see 20.
Just two years after diagnosis, he stopped being able to walk – due to muscle weakness in his legs.
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He takes daily steroids for his muscles, and heart medication for his weakened cardiovascular system.
Doctors have given him a decade left to live, and told he may have significant heart problems as he gets older.
Jade said: “As Jayden’s mum, I’m absolutely devastated.
“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.”
‘Trip of a lifetime’
Sean is currently hoping to take Jayden on a “trip of a lifetime” to Florida, US – and wants him to meet his hero, Dwayne ‘The Rock’ Johnson.
In June 2025, he’ll be taking on one of the ‘world’s toughest challenges’ – which involves rock climbing, swimming and sprinting – to help raise funds.
Sean, a track isolation operative, from York, Yorkshire, said: “Time is of the essence – we want Jayden to live the best life he can, while he’s still here.
“He loves ‘The Rock’ – because I got him into Jumanji.
“We want him to be able to meet him, we’ve been trying to reach out to him on social media.
“It would be Jayden’s dream to have a chat with him while in Florida.”
Sean is raising as much money as he can to get Jayden to Florida and realise this dream, 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.
What is Duchenne muscular dystrophy?
Duchenne muscular dystrophy (DMD) is a muscle wasting condition that causes progressive muscle weakness
It’s caused by a lack of a protein called dystrophin, which causes muscle fibres to break down.
They’re replaced by fibrous or fatty tissues that cause the muscle to gradually weaken.
DMD is a severe type of muscular dystrophy that often shortens life expectancy.
Most people with DMD will reach adulthood but they’re more likely to die from heart or respiratory failure before or during their 30s.
Someone with DMD might show the following symptoms:
- Difficulties running, jumping and climbing stairs
- Difficulty getting up from the floor
- A waddling gait (walking on their toes with an arched lower back)
- Difficulty walking as fast or as far as other children
- A tendency to fall more than other children
- Learning and behavioural difficulties
- Learning to speak later than usual
Often signs will appear between one and two years of age.
“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.
“To train for it, I’m going out on my pushbike and doing three gym sessions a week.
“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: “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.”
Sean’s crowdfund for Jayden can be found here.
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