'MND took our son at 14 - anyone at any age can get it'

"Kyle Sieniawski, 14, from Pontypridd, Rhondda Cynon Taf, died on 27 November, after being diagnosed less than a year ago with MND. The disease typically affects people aged over 50, and Kyle is believed to be the youngest person to have died with MND in the UK. Former rugby league star Kevin Sinfield, who is currently running seven ultramarathons in seven days for MND awareness, told Kyle's family the "community" will be there for them, and Kyle "will always be remembered"."

"Kyle's mum, Melanie Sieniawski, told BBC Breakfast: "It can affect anybody at any age, at any time. "They need [to do] as much fundraising and awareness as they can - to get a cure as soon as possible." His father, Mark, said the family wanted to keep raising awareness. "To be honest what Melanie and I went through was horrific", he said, describing his son's condition as "horrendous to watch"."

"In January, aged 13, Kyle was diagnosed with MND after he began losing mobility in his arm. His condition deteriorated rapidly, and he was subsequently left unable to use any of his limbs. Following his diagnosis, Kyle's family said they were "desperate" to bring him home from 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."

Kyle Sieniawski, 14, from Pontypridd, died on 27 November after an MND diagnosis less than a year earlier. MND usually affects people over 50; Kyle is believed to be the youngest person in the UK to have died from the disease. He began losing mobility at 13 and rapidly became unable to use his limbs, relied on a breathing mask and feeding tube, and was moved into intensive care after an infection. His parents and brother lived with him at Noah's Ark Children's Hospital for more than nine months because their home could not be adapted, and the family called for increased fundraising, awareness and research.

Read at www.bbc.com