Just over a year ago 13-year-old Kyle Sieniawski was like any other boy his age who enjoyed playing with friends and his favourite hobby taekwondo. However in March 2024 Kyle began to experience neurological symptoms which affected his mobility. At first Kyle was experiencing difficulty moving his left arm but since October his condition has "rapidly" deteriorated and he is now unable to walk and has largely been confined to a hospital bed since December 31 last year. In January his family were told the shocking and devastating news that Kyle has motor neurone disease (MND). He is thought to be the youngest person in the UK to be living with the condition. READ MORE: Woman taken to hospital after car flips onto its roof READ MORE: Man critically ill after assault outside village pub With his condition worsening Kyle has spent much of the last five months looking at the same four walls at Noah's Ark Children's Hospital in Cardiff. His family have been trying to do all they can to get him home but due to their property being inaccessible for wheelchairs and other medical equipment Kyle would need he has remained in hospital. Kyle's mum Melanie, dad Mark, and 17-year-old brother Liam are all living between a family room at Noah's Ark and the Ronald McDonald house. They say their situation has highlighted that processes for families like theirs "simply take far too long". Despite Kyle being diagnosed with MND in mid-January the family are yet to receive any disability benefits. The family say they have found themselves stuck "in the middle of a gap" in the systems that should be supporting them. They have been left worrying about the wait for benefits and potentially having to sell their Pontypridd home on top of the already-agonising situation of having a seriously-ill child. Despite being stuck in hospital Kyle's aunt Heather Jones said Kyle is "very strong and is still trying to keep a smile on his face". Get the latest Ponty news first by signing up to our newsletter here. His mum Melanie said: "I feel like he has good days and bad days. He is worse since he came in in December. "It's difficult for him especially and us as parents to adapt to the different things he needs. Obviously a year ago he was able-bodied, a perfectly healthy child, and now he's disabled and that's quite difficult – and heartbreaking – to watch." Heather added the "ultimate goal" would be to get Kyle out of the hospital and at home so that he can be in his own environment. "It could boost his mood no end." The current family home has been assessed by the local council who determined that it would not be possible to adapt the property to suit Kyle's needs. Melanie says that it feels like the family are in "limbo" not knowing who they can turn to. She said: "What we found difficult and what we've noticed is that the process for everything is too long. We are still waiting for disability benefits – it takes an awful long time to get anything. The average wait seems to be months and months and other parents we have spoken to at the hospital are having similar issues. "We're all in limbo at the moment but we haven't got the time for the long waits. There needs to be something available almost instantly, especially when it comes to children, even if it's on a temporary basis." In order to get Kyle home the family would need to sell and rebuy a house which itself could still need to be adapted. "That’s an awfully long process and not something you want to look at when you've got an ill child." Melanie added that there seems to be a complete gap in the system and "something that is missing in the middle" to help families who find themselves in an agonising situation like hers. "You'd think that in times of extreme distress that something could be done to help you find a suitable home that is fit for purpose," she said. Kyle is also stuck at the hospital as the family have been unable to get a mobility vehicle to help them get out and about with Kyle in his wheelchair as they are still waiting to receive disability living allowance. Even when they do receive this they fear that the waiting list to get an adapted car is around six months. If the family were able to access a suitable car the hope is that Kyle would be well enough to go on small trips that would give the family some time away from the hospital environment and provide a sense of some normality. "It would be nice for the family to be able to take him for some fresh air at the park or to the cinema and brighten him up a bit," Heather said. "At hospital he’s stuck with the four walls. With the condition he’s not able to move anymore so he’s just stuck watching the TV." Melanie said: "It's just an awfully long time for things to happen and I think that it should be highlighted. There's millions of people up and down the country going through it and you don't realise until you come into the hospital how many ill children there are. We all go about our everyday lives, normal lives, and we don't realise what some people have to go through." As well as fighting to try and get Kyle home while it is possible the family are also fighting for more funding to be allocated for MND research so that no other family finds themselves in the "awful situation" they are. They are encouraging people to sign a petition which calls on the UK Government to allocate regular funding to research into the condition. It has already been signed more than 4,000 times. "Our main purpose has been spreading awareness of MND and how horrible an illness it is," Melanie said. "The petition aims to get funding into research so that everybody can have access to trials and ensure there is funding for research to sort this disease out once and for all. When you see what it is and how awful it is you know there needs to be a focus on finding a cure for it. "There's lots of different charities trying to do as much as they can but we just want to highlight that research needs to begin right away because there's not really any time to wait. When you get diagnosed you need access to trials or treatment straightaway. "I never would have thought this would have happened to Kyle but it can happen to anyone. If they can get to a point where they can treat it and cure it then nobody else has to suffer again in the future." Melanie, Mark, and the wider family are also grateful for support they have had from the community through a Just Giving page, which you can see here. Donations have supported the family through this incredibly tough time and allowed Melanie and Mark to take time off work in order to spend precious time with Kyle. "The support has been amazing," Melanie said. "The hospital have been really good. It's an awful situation but the staff have made it better where they can. We've had lots of support from family and friends who have brought food or different things to us. "The fundraising has been overwhelming. Complete strangers have given donations – it's been absolutely amazing. We've also noticed a lot of other people who've got the disease have got in contact with us and they give you information so it's good that there's a community there." One of those who has got in touch is Geoff Burrow who is the father of English rugby league player Rob Burrow, who raised awareness of MND before he died of the disease in 2024. "He has been incredibly kind and we've kept in touch," Heather said. Last week Kyle was also paid a visit by former professional boxer Joe Calzaghe, which Melanie says Kyle loved. "We've also been to the rugby and Ty Hafan, who have been brilliant, for respite. All the things like this help because it makes him happy and gives him something to focus on that isn't how he's feeling," Melanie said. "You just wish you were going on holidays rather than doing things in the circumstances we are." Going forward the family say they are taking things day by day and will be looking to sell their house to find something more suitable. Kyle has also began a clinical trial which they are unable to speak about but hope will yield some positive results. Get daily breaking news updates on your phone by joining our WhatsApp community here. We occasionally treat members to special offers, promotions and ads from us and our partners. See our Privacy Notice.