Motor neurone disease: Pontypridd boy, 13, diagnosed with condition

The family of a boy living with motor neurone disease have said it was a “massive shock” for him to be diagnosed at the age of 13.

Kyle Sieniawski, from Pontypridd, Rhondda Cynon Taf, started to lose mobility in his left arm last year before experiencing other neurological symptoms.

Almost a year after she first noticed the symptoms, Kyle’s mum told Radio Wales Breakfast that his conditions had deteriorated to a point where he can no longer feed himself.

Motor neurone disease (MND) is most common in adults over 50 and Kyle is believed to be the youngest person in the UK with the condition.

Kyle was diagnosed with MND on 17 January – almost a year after his mum Melanie first noticed symptoms.

“He wasn’t walking straight and was using one arm to support the other,” she said.

Kyle was initially taken to the Royal Glamorgan Hospital in Rhondda Cynon Taf for tests followed by an MRI scan.

Doctors initially thought he had enterovirus which is an infection that can cause illness in babies, children, and teens.

But his family became concerned when his condition began to deteriorate further.

“In October his right arm started to become a bit shaky. By November he was struggling to walk up the stairs,” his mum said.

Kyle’s aunt Heather thought it was MND after researching the symptoms, but it still came as a “massive shock”.

“With the tears that have been spilled the last few months it’s been like a river,” said Heather.

Kyle needs support when eating and walking and has spent the past few weeks at Noah’s Ark Children’s Hospital in Cardiff.

Heather said it was “unbelievable” he was so cheerful, which was having a positive impact on the rest of the family.

“I don’t think a lot of children would react in the same way. He is an inspiration,” she said.

The teenager spends his time playing games with his family including Connect Four, and has a VR headset that allows him to watch films hands-free.

His family said they felt “really positive” after discussions were held about a clinical trial which could slow down the disease.

But they were left “devastated” after it was put on pause.

The family said they felt there is “no hope” without the trial, according to Heather.

“It will make a difference. I’m hoping because he is so young he has the energy to fight it,” she added.

Heather said the response from the community had been “absolutely outstanding” with people setting up fundraisers “left, right and centre”.

“One lady even offered a luxury caravan so the family can use to spend some time with Kyle. It’s been amazing. I can’t get over it,” she said.

MND is a relatively rare condition which is most common in people over 50, but adults of any age can be affected.

A person’s lifetime risk of developing MND is one in 300, according to the MND Association.

MND affects up to 5,000 adults in the UK at any one time.

A person’s lifetime risk of developing MND is one in 300.

Source: NHS