Family of child with Motor Neurone Disease plead for help to bring him home

Stephen Price

The family of the youngest person in the UK to have been diagnosed with Motor Neurone Disease has appealed to the nation to help secure new accommodation that will allow him to come home from a long stay at Noah’s Ark Children’s Hospital for Wales.

Kyle Sieniawski from Pontypridd, began to lose mobility in his left arm in early 2024 before experiencing other neurological symptoms.

Kyle was diagnosed with Motor Neurone Disease (MND) on 17 January 2025, a year after first showing symptoms, in a massive shock to family and friends, as the condition mainly affects people in their 60s and 70s.

Kyle has been receiving treatment at the Children’s Hospital for Wales since December 2024 and is unable to return home because the family home isn’t suitable for the care he now requires.

Writing on Change.org, Kyle’s aunty Heather Jones shared: “My 14-year-old nephew, Kyle Sieniawski, is facing an unimaginable challenge. He is the youngest person in the UK to be diagnosed with Motor Neurone Disease (MND), a condition that has completely paralysed him.

“Since December 2024, Kyle has been stuck in a hospital because his house was deemed ‘unsuitable’ by the local authorities. This situation is heartbreaking for our family, as Kyle cannot meet his disability needs at home, and no alternative solutions have been provided by the local authority or Welsh Government.

“My family is desperate for help. As they face the daunting task of selling their home, Kyle remains in limbo. Every day he spends in the hospital is another day away from the comfort and familiarity that any teenager deserves.

“We urge the local authorities to take immediate action to help Kyle. We are calling for Kyle to be placed in temporary disabled accommodation until his home sells. This is a critical step towards providing him with the quality of life he deserves and alleviating the pressure on my family.

“We cannot do this alone; we need your support. By signing this petition, you can help us urge the local authorities to prioritise finding a suitable temporary home for Kyle. Let’s work together to show compassion and support for Kyle and ensure he receives the care and comfort he desperately needs. Please, sign this petition to help make a difference in Kyle’s life.”

Keeping the family together

As well as the petition, Heather has also organised a JustGiving crowdfunder which aims to cover some of the costs facing the family as they rally together at his time of need and, importantly, spend this precious time together.

Kyle’s mum, Melanie, and dad, Mark have put the family home on the market but haven’t had any luck selling, so they are unable afford to buy a property which could be adapted for Kyle.

In the meantime, Kyle’s mum and Dad remain by his side at the hospital, getting very little sleep, but thankful for all the time they have together. Kyle can still talk but can’t move so wakes throughout the night if he has an itch or is frightened or in discomfort.

Plaid Cymru’s Heledd Fychan MS has been passionately raising this issue in the Senedd and there has been media coverage of this story, but the family are growing impatient at the lack of relatively simple actions that they say would make life ‘just a little less awful’ for Kyle.

Heather’s Justgiving page shares: “This is my lovely nephew, Kyle. This time last year Kyle was just like any other healthy 13 year old boy, going to school and playing with friends.

“However, Kyle hasn’t been as lucky as most teenage boys because just last March he began to experience some neurological issues, and after enduring many hospital visits he has sadly been diagnosed with the horrific Motor Neuron Disease.

“This disease is very rapid and is taking away Kyle’s mobility at an alarming rate. He’s already in the advanced stages and is no longer able to walk, move his left arm and only has 30% mobility in his right arm remaining.

“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!

“I am trying to get as much financial support as possible to hopefully relieve some of the financial pressure due to Kyle’s parents not being able to work so that they can by his side at this time. Words can’t express what they are currently going through. If anyone wishes to donate we would be forever grateful, but if you could please share the hell out of this it would mean the world to us.”

Petition

Speaking to Nation.Cymru, Heather said: “The idea of setting up a petition actually came from one of Kyle’s Facebook followers. The community has been absolutely fantastic and the messages I receive via his page are truly overwhelming.

“Everyone would like nothing more than to see Kyle settled and in the comfort of home surroundings. He’s been in hospital since December 2024 and is suffering with one of the worst diseases possible and he deserves better.

“We aren’t asking the earth. We are just asking for a little help with temporary housing until Kyle’s home sells and his family can purchase a more suitable property. It’s just such a shame that more help isn’t being offered, especially as Kyle’s illness is life limiting – he needs help now.”

Heather added: “Kyle is such an inspiration. He’s just 14 years old but he never complains. Some days have been so tough on him but his cheeky character still shines through and he never fails to make us laugh.

“His mum, dad and brother have been by his side every step of the way, but as you can imagine, some days can be very stressful because they are watching Kyle deteriorate in front of them with this awful disease.

“We are hoping that by keeping Kyle’s story ‘out there’ we are also helping to raise awareness of MND.  It is truly a heartbreaking disease and one that requires as much coverage as possible.

“More funding needs to be provided for research and sooner rather than later… MND does not wait.”

Rhondda Cynon Taf Council has been asked to respond.

Sign the petition here, follow Kyle’s Story on Facebook and donate to the family’s JustGiving page.