'We were in denial about our boy's life-limiting condition... but the response has been incredible'

JAYDEN Greening is described by his mum as “cheeky, mischievous, with the best smile in the world”.

- ELLIE GOSLEY

The eight-year-old is also the “best big brother” to his younger sisters Isabelle, seven, and Daisy-May, four.

However, while Jayden was apparently born healthy, his family started to realise something wasn’t quite right when his sister had started to overtake him in many aspects of his mobility.

By age three, little Jayden still hadn’t taken his first steps.

After concerns were raised by a health visitor and a number of tests were carried out, it was discovered that Jayden was living with Duchenne’s muscular dystrophy (DMD), a serious condition which leads to the progressive degeneration of muscles.

His mum, Catherine, says this devastating news plunged the family, from Tonypandy in the Rhondda, into a “dark depression”.

"We were gutted - it was the worst day of our lives,” she said.

“We didn’t know anything about it, so we were trying to learn more and made the mistake of Googling it, and the first thing we saw was a boy who with Duchenne’s who had died at 12-years old.”

Catherine and Jayden’s dad Ashley’s lives were turned upside down and they were left grieving a future they had planned.

“Me and Ash went into the most dark depression to the point that for a full year, we could we could barely do anything.”

Until relatively recently, boys with DMD usually did not survive much beyond their teenage years.

But thanks to advances in cardiac and respiratory care, life expectancy is increasing and many live to see their 20s and sometimes 30s.

The family also went through the worry that their future children or grandchildren will have Duchenne’s, as it can be passed on genetically through the mother.

After tests, the family found out that the DMD in Jayden’s case was caused by a genetic mutation.

“Thankfully I’m not a carrier, because if I was, my two daughters would be at risk of having a son with DMD,” Catherine said.

“Now the girl’s don’t have to worry about it.”