Kyle’s family have sworn to fight for a cure to motor neurone disease after he was given the shock diagnosis
A schoolboy has become the youngest person in Britain to be diagnosed with motor neurone disease – and his family are fighting to find a cure.
Kyle Sieniawski, 13, was like other schoolboys who enjoyed playing with his friends until the shock diagnosis. The disease usually affects adults over 50 and sufferers include the late rugby league player Rob Burrow who died last year. Sport-loving Kyle was taking part in Taekwondo but noticed his left arm would not move properly in March 2023.
After a series of scans and tests his parents Melanie and Mark were given the shocking diagnosis he suffers from the degenerative condition MND.
But Kyle’s family have been told the youngster, from Pontypridd, South Wales, is the youngest person in the UK to receive a diagnosis – and the disease is developing “rapidly”. His aunt Heather Jones says: “Kyle has been amazing, stronger than I would ever imagine a 13-year-old being.
He always has a smile on his face. He is so brave. Whenever you ask him how he is, he says he’s ok. He’s an inspiration to us all.” Heather said the family was given the diagnosis last month and have been told that his mobility is reducing “at an alarming rate. We’re in shock. It’s been heartbreaking,” she added. “Kyle’s mobility has deteriorated rapidly. It wasn’t long before Christmas he could walk.”
A fundraiser for Kyle hopes to raise enough money for Kyle to take part in a clinical trial anywhere in the world and to ease the burden on his parents. Heather said: “As you can imagine this is a truly heartbreaking time for Kyle and his family, because as most people know there isn’t currently a cure for this terrible disease.
“However a shred of hope has been given as discussions are taking place about Kyle possibly attending another hospital either in the UK or abroad, to undergo a clinical trial – anything that may help is worth a shot!
Kyle has been at Noah’s Ark Children’s Hospital in Cardiff for the last three weeks, where he spends time playing Connect 4 with his brother Liam, 17. Heather said: “He can’t move his hand so he tells us which slot to put the pieces in and he wins every time, so he thinks he’s a champion.”
The fundraising appeal has already raised more than £10,000 and Heather says the family has taken comfort in the support they have received. She said: “The support has been outstanding. The comments in particular are really helping the family as Melanie and Mark are reading them and it’s comforting them.
“Kyle’s parents – Melanie and Mark – want to thank everyone for their kindness and generosity, as well as the staff at Noah’s Ark, where Kyle has been staying. Someone who lost a loved one to MND even got in touch to offer a toilet for MND users.
“The comments and general support from people – strangers – offering to do fundraisers, it’s just so lovely. I can’t even describe how amazing people have been.
“I just want Mark and Melanie to be by his side. My brother, Mark, is a carer, but there’s no way he could possibly work at the minute because he’s in pieces. They need to be by his side because MND is very rapid and Kyle could deteriorate quite quickly.”