Mum of Scots boy with rare muscle wasting condition knew something was wrong when he couldn’t jump as tot

A mum is determined to keep fighting to find a cure after her son was diagnosed with a rare and fatal muscle wasting condition.

Nine-year-old Dexter Dickson, of Dundee, has Duchenne Muscular Dystrophy, one of the most severe forms of muscular dystrophy.

Dexter’s mum and full-time carer, Rachel Williamson, first noticed something was not quite right when her son was three.

The 33-year-old realized that he wasn’t able to jump, so along with dad, Dane, also 33, she took him to the GP and then a pediatrician.

While there, Dexter did what is known as the ‘Gower sign’, where hands and arms are used to “walk up” the body to help stand up.

It indicates weakness of the proximal hip muscles and if often referred to as a classic symptom of muscular dystrophy in patients.

After a series of various tests, it was confirmed on the day before Dexter’s fourth birthday that he did in fact have DMD as suspected.

Dexter’s mum and full-time carer, Rachel Williamson, aged 33, first noticed something was not quite right when her son was just three

Rachel and Dane initially decided to take Dexter to the GP
Rachel and Dane initially decided to take Dexter to the GP

Rachel told the Record: “The doctors aren’t very hopeful or positive when the child is first diagnosed.

“They tend to say just enjoy your child, this is a terminal illness, we don’t have many options.

“Obviously, that’s a really hard thing to hear because we didn’t realize anything was wrong for four years.

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“And then we got that sprung on us quite quickly over just a month long period of testing and whatnot.”

After the diagnosis, she decided to do her own research into the condition and stumbled across Duchenne UK.

The leading charity for the condition, it raises money to fund research for treatment and ultimately a cure for DMD.

Rachel has set up Team Dex in her son's name
Rachel has set up Team Dex in her son’s name

The mum-of-one then decided to set up Team Dex, a family and friends fund set up in collaboration with Duchenne UK.

She explained: “It was one of the first places that I had been where they have talked about the treatments that are coming.

“It was a really hopeful place to find – somewhere that wasn’t all doom and gloom.

“It was like this is coming and this is coming and we’re going to do whatever we can to stop DMD and I found that really inspiring.

“I got in touch with and said I wanted to make a family and friends fund and that’s what Team Dexter is.”

Rachel has raised £20,000 for Duchenne UK
Rachel has raised £20,000 for Duchenne UK

Rachel continued: “I think the fact that they’re run by two mothers whose sons both have some muscular dystrophy is very important.

“They don’t walk away with massive paychecks, all their effort and all the money that Team Dex raises goes straight to research.

“They don’t take 10% off for admin or anything like that, they just put it all in.

“All they care about is helping people with this disease and I just think that’s amazing.”

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One of the first activities to raise money for the cause coincided with World Duchenne Day on September 7, 2017.

It was then that Rachel decided to share beyond close friends and family that Dexter had been diagnosed with DMD.

Following this, she also ran the Loch Ness 10K and raised around £2,000 from just a single social media post.

After various different events, the fund has managed to raise almost £20,000 with the amount rapidly rising every day.

Rachel said: “I was finding everything a little bit difficult with the diagnosis.

Dexter is 'so happy and funny and full of life'
Dexter is ‘so happy and funny and full of life’

Rachel is now looking forward to a cure for DMD
Rachel is now looking forward to a cure for DMD

“By getting involved in charity work I felt like I was doing something, even if it was just a little compared to everyone else.”

Dexter was put on steroids when he was younger, a decision his mum is glad she made, mostly to help with severe inflammation.

However, the steroids do come with some nasty side effects including osteoporosis, delayed puberty, cataracts and digestive issues.

This is largely due to the amount of time that people with DMD are on them. The mum is now looking forward to a cure.

Rachel concluded: “It’s definitely an emotional journey, there’s been ups and downs but it’s taught me so much.

“I’ve definitely learned to appreciate small things, the small moments and Dexter just grows gradually every day.

“He just makes the world a better place and his dad and his granny and everyone just couldn’t imagine life without him.

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“He’s just so happy and funny and full of life.

“I haven’t really had much experience with anyone disabled and it makes you appreciate how much everyone brings to the world.

“It might not be being the best athlete or building houses or whatever but people have such amazing qualities.

“Sometimes you just have to look a little harder.”

A Duchenne UK spokesperson said: “Team Dex are one of our brilliant Family & Friends Funds, which means that 100% of the money they raise is invested in research projects of their choosing. So far, the family have raised more than £18,000!

“This has gone towards projects to advance gene therapy, a potentially game-changing treatment which treats the underlying genetic cause of DMD, and towards improving understanding of the best heart care for boys with DMD.

“We couldn’t achieve our mission without the support of families like Dexter’s, who play an essential part in raising awareness and funds.

To donate to the Team Dex fundraiser, please click here.

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George Holan

George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.

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