'mnd Took Our Son At 14 - Anyone At Any Age Can Get It'

The family of a teenage boy who died aft being diagnosed pinch centrifugal neurone illness (MND) has warned nan rare, degenerative information tin deed "anybody astatine immoderate age, astatine immoderate time".

Kyle Sieniawski, 14, from Pontypridd, Rhondda Cynon Taf, died connected 27 November, aft being diagnosed little than a twelvemonth agone pinch MND.

The illness typically affects group aged complete 50, and Kyle is believed to beryllium nan youngest personification to person died pinch MND successful nan UK.

Former rugby convention prima Kevin Sinfield, who is presently moving 7 ultramarathons successful 7 days for MND awareness, told Kyle's family nan "community" will beryllium location for them, and Kyle "will ever beryllium remembered".

Kyle's mum, Melanie Sieniawski, told BBC Breakfast: "It tin impact anybody astatine immoderate age, astatine immoderate time.

"They request [to do] arsenic overmuch fundraising and consciousness arsenic they tin - to get a cure arsenic soon arsenic possible."

His father, Mark, said nan family wanted to support raising awareness.

"To beryllium honorable what Melanie and I went done was horrific", he said, describing his son's information arsenic "horrendous to watch".

In January, aged 13, Kyle was diagnosed pinch MND aft he began losing mobility successful his arm.

His information deteriorated rapidly, and he was subsequently near incapable to usage immoderate of his limbs.

Following his diagnosis, Kyle's family said they were "desperate" to bring him location from hospital but were incapable to do truthful because their spot could not beryllium adapted to meet his needs.

His parents and brother, Liam, spent much than 9 months surviving pinch him astatine Noah's Ark Children's Hospital successful Cardiff.

He relied connected a breathing disguise and feeding tube, and was moved into intensive attraction past period aft processing an infection.

Kyle's family described him arsenic "brilliant" and a "troublemaker", adding "his characteristic shone correct through".

Mr Sieniawski said nan teen "was a fighter", and had received visits from galore others affected by MND while successful hospital.

"They each thought he was brilliant," he said.

"He touched truthful galore people, to beryllium honest. He was amazing.

"He had banter and laughter pinch everybody. We had truthful galore strangers travel to sojourn him. They each thought he was amazing."

Ex-Leeds Rhinos rugby subordinate Sinfield met Kyle's family astatine Gorsynm Rugby Club, Swansea, midway done his latest MND fundraising situation connected Wednesday.

The 45-year-old took connected nan challenge successful honour of his friend and erstwhile teammate Rob Burrow, who died pinch MND successful June past year.

Sinfield began nan 7 successful 7: Together situation successful Bury St Edmunds, successful Suffolk, connected 1 December, and is undertaking 7 ultramarathons crossed UK to Ireland, earlier concluding nan situation successful Leeds connected Sunday.

He is moving astatine slightest 45km (27.9 miles) each time of his challenge, successful bursts of 7km (4.3 miles).

In southbound Wales, he took clip retired to meet Kyle's family connected nan 3rd of his ultramarathons, pinch hundreds of wellwishers joining him for portion of nan way done Swansea.

"We'll tally a spot faster and harder this leg," he told Kyle's family.

The player-turned-rugby coach hopes to raise £777,777 - successful honour of nan number 7 garment worn by Burrows - to adhd to nan much than £10m he has raised since 2020.

Following their son's decease past week, Kyle's family said successful a statement: "Kyle fought pinch everything he had, but successful nan extremity it each became excessively overmuch for him and he very sadly passed away."

"We're conscionable wholly heartbroken.

"Kyle... we'll miss you truthful very overmuch buddy and we emotion you much than words could ever perchance say."

MND affects nerves recovered successful nan encephalon and spinal cord, which show your muscles what to do.

This leads nan muscles to weaken and stiffen complete clip and yet impacts really you walk, talk, eat and breathe.

It is simply a comparatively uncommon condition, and is astir commonly diagnosed successful group complete 50.

A person's life consequence of processing MND is 1 successful 300; astir 5,000 adults successful nan UK will person nan illness astatine immoderate 1 time.