A teenager has died less than a year after being diagnosed with motor neurone disease (MND), a rare degenerative condition that typically affects adults over 50.
The family of Kyle Sieniawski, 14, from Pontypridd, Rhondda Cynon Taf, confirmed his death in a tribute on Friday describing him as a “beautiful boy” that made them smile “a million times and more”.
“We’re absolutely heartbroken to announce that our little superhero has very sadly lost his battle with MND,” they said.
“Kyle fought with everything he had but in the end it all became too much for him and he very sadly passed away yesterday evening.”
Kyle was diagnosed with MND in January at the age of 13, after he began losing mobility in his arm. His condition deteriorated rapidly, and he later became unable to use any of his limbs. He relied on a breathing mask and feeding tube.
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 spent more than nine months living with him at Noah’s Ark Children’s Hospital in Cardiff.
According to the family, Kyle was moved into intensive care earlier this month after developing an infection.
They had been active on social media, sharing updates about his condition and the wider challenges faced by people living with MND on a Facebook page called Kyle’s MND Story.
In their tribute, the family added: “We’ll miss you so very much buddy and we love you more than words could ever possibly say.
“We can already picture you up there challenging your two nans and grandad to a game of Connect 4, and that you’re making them smile, just like you made us smile a million times and more.”
MND affects nerves found in the brain and spinal cord, which tell your muscles what to do.
This leads them to weaken and stiffen over time and usually affects how you walk, talk, eat and breathe.
It is a relatively rare condition which is most common in people over 50.
A person’s lifetime risk of developing MND is one in 300 and about 5,000 adults in the UK will have the disease at any one time.