Johnston mum talks of her son's brave battle with Duchenne

The six-year-old is rarely seen without a smile on his face and he’s in his element whenever he’s around his family at their home in Johnston, Haverfordwest.

Jenson was born with Duchenne Muscular Dystrophy, which is a life-limiting and progressive muscle wasting disease, for which there is currently no cure.

Children like Jenson tend to reach a growth plateau at around seven years of age, but then begins a gradual regression with the result that his teenage years will most likely be spent confined to a wheelchair.

At present, the life expectancy of a person suffering from Duchenne is 27 years.

“Founding out that Jenson had Duchenne was a great shock to us both,” says his mother, Chloe Smith.

“For a long time we hoped that they’d got it wrong and that someone would find a cure, but sadly there’s nothing.”

Chloe and her partner Rikki Schroeder began suspecting that things weren’t right when Jenson was a young baby.

“He wasn’t meeting his basic milestones,” explained Chloe, “such as his ability to say words and also his ability at motor skills such as crawling, walking and using building blocks.”

And so when he was 17 months old Jenson was referred for tests which confirmed high levels of creatine in his blood.

There then began a series of intense physiotherapy sessions to improve hismobility and at the age of three years and four months Jenson, who is also autistic, took his very first steps.

He’s currently on steroid medication to help strengthen his heart and lungs.

“We’re very thankful that he’s still developing, although he still has the mental capacity of a toddler,” continued Chloe.

“He’s completely non-verbal but communicates with us so well in his own individual way. He’s a very nosey little boy and is honestly the happiest child I’ve ever met.

"He’s also very sensory and loves bubbles, different textures, bright colours and music and dance and has never been bothered with toys which is very common for children with autism.”

Jenson is one of only three children in Pembrokeshire who are living with Duchenne and earlier this month Pembroke Castle was lit in red to mark Duchenne Awareness Day.

Pembroke Castle Credit: Chloe Smith (Image: Chloe Smith)

“Even though there’s currently no cure, we’re always hopeful,” concluded Chloe.

“If there was as much money put into Duchenne as there was put into Covid, a cure would have been found by now. And this is very disappointing.

"But we’re confident that steps are being made all the time and, hopefully, Jenson will be able to benefit in the years to come.”

If anyone would like to find out more about Duchenne Muscular Dystrophy or make a donation, they can do so on https://www.duchenneuk.org/