Family 'in limbo' as boy, 13, is stuck in hospital

JUST over a year ago 13-year-old Kyle Sieniawski was like any other boy his age who enjoyed playing with friends and his favourite hobby taekwondo.

- ELLIE GOSLEY

However, in March last year Kyle began to experience neurological symptoms which affected his mobility.

At first Kyle was experiencing difficulty moving his left arm but since October his condition has “rapidly” deteriorated and he is now unable to walk and has largely been confined to a hospital bed since December 31.

In January his family were told the shocking and devastating news that Kyle has motor neurone disease (MND). He is thought to be the youngest person in the UK to be living with the condition.

With his condition worsening Kyle has spent much of the past five months looking at the same four walls at Noah's Ark Children’s Hospital in Cardiff.

His family have been trying to do all they can to get him home but due to their property being inaccessible for wheelchairs and other medical equipment, Kyle has remained in hospital.

His mum Melanie, dad Mark and 17-year-old brother Liam are all living between a family room at Noah’s Ark and the Ronald McDonald house. They say their situation has highlighted that processes for families like theirs “simply take far too long”.

The family are yet to receive any disability benefits and say they have found themselves stuck “in the middle of a gap” in the systems that should be supporting them.

They have been left worrying about the wait for benefits and potentially having to sell their Pontypridd home.

Melanie said: “It's difficult for him especially and us as parents to adapt to the different things he needs.

“Obviously a year ago he was able-bodied, a perfectly healthy child, and now he’s disabled and that’s quite difficult - and heartbreaking - to watch.”

Kyle's aunt Heather Jones said the “ultimate goal” would be to get Kyle out of the hospital and at home so that he can be in his own environment.

“It could boost his mood no end.”