MND took our son Kyle aged 14

The family of a teenage boy who died after being diagnosed with motor neurone disease (MND) have warned the rare degenerative disease can affect “anyone, at any age, at any time”.

Kyle Sieniawski, 14, from Pontypridd, Rhonda Cynon Taff, died November 27after being diagnosed with MND less than a year ago.

The condition usually affects people over 50 and Kyle is believed to be the youngest person to die from MND in the UK.

Former rugby league star Kevin Sinfield, who is currently running seven ultramarathons in seven days to raise awareness of MND, told Kyle's family that the “community” will be there for them and Kyle will “always be remembered.”

Kyle's mum Melanie Sieniawski told BBC Breakfast: 'It can affect anyone, at any age, at any time.

“They need [to do] as much money and awareness as possible to get the cure as soon as possible.”

His father, Mark, said the family wants to continue raising awareness.

“Honestly, what Melanie and I had to go through was terrible,” he said, describing his son's condition as “horrible to watch.”

In January, when Kyle was 13, he was diagnosed with MND after he began to lose use of his arm.

His condition quickly deteriorated and he subsequently lost the use of any limb.

After his diagnosis, Kyle's family stated that they were “desperate” to get him home from the hospital but were unable to do so because their property could not be adapted to meet his needs.

His parents and brother Liam spent more than nine months living with him at Noah's Ark Children's Hospital in Cardiff.

He used a breathing mask and feeding tube and was transferred to intensive care last month after developing an infection.

Kyle's family described him as “brilliant” and a “troublemaker”, adding that “his personality shone through.”

Mr Sieniawski said the teenager “was a fighter” and was visited by many other people affected by MND while in hospital.

“They all thought he was brilliant,” he said.

“Honestly, he touched a lot of people. He was amazing.

“He joked and laughed with everyone. So many strangers came to us. They all thought he was amazing.”

Former Leeds Rhinos rugby player Sinfield met Kyle's family at Gorseinon Rugby Club in Swansea midway through his latest fundraising challenge for MND on Wednesday.

45 year old man accepted the challenge in honor of his friend and former teammate Rob Burrow, who died of MND last June.

Sinfield began the 7 of 7: Together challenge in Bury St Edmunds, Suffolk, on December 1 and will run seven ultramarathons from the UK to Ireland before finishing the event in Leeds on Sunday.

Each day of his competition he runs at least 45 km (27.9 miles) in 7 km (4.3 miles) intervals.

In South Wales he took time to meet Kyle's family for the third of his ultramarathons, and hundreds of well-wishers joined him for part of the route through Swansea.

“At this stage we will run a little faster and stronger,” he told Kyle’s family.

The coach-turned-rugby player is hoping to raise £777,777 – in honor of the number seven shirt Burrows wears – on top of the more than £10 million he has raised since 2020.

Following his son's death last week, Kyle's family said in a statement: “Kyle fought as hard as he could, but in the end it all became too much for him and he sadly passed away.”

“We are just completely heartbroken.

“Kyle…we'll miss you dearly, buddy, and we love you more than words can say.”

MND affects the nerves in the brain and spinal cord that tell your muscles what to do.

This causes the muscles to weaken and tighten over time, which ultimately affects the way you walk, talk, eat and breathe.

This is a relatively rare disease, most often diagnosed in people over 50 years of age.

A person's lifetime risk of developing MND is one in 300; Around 5,000 adults in the UK will have the disease at any one time.