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| Motor neurone disease: Pontypridd boy, 13, diagnosed with condition | |
| (5 days later) | |
| Motor neurone disease is an uncommon condition that mainly affects people in their 60s and 70s. | Motor neurone disease is an uncommon condition that mainly affects people in their 60s and 70s. |
| The family of a boy living with motor neurone disease have said it was a "massive shock" for him to be diagnosed at the age of 13. | The family of a boy living with motor neurone disease have said it was a "massive shock" for him to be diagnosed at the age of 13. |
| Kyle Sieniawski, from Pontypridd, Rhondda Cynon Taf, started to lose mobility in his left arm last year before experiencing other neurological symptoms. | Kyle Sieniawski, from Pontypridd, Rhondda Cynon Taf, started to lose mobility in his left arm last year before experiencing other neurological symptoms. |
| Almost a year after she first noticed the symptoms, Kyle's mum told BBC Radio Wales Breakfast that his conditions had deteriorated to a point where he can no longer feed himself. | Almost a year after she first noticed the symptoms, Kyle's mum told BBC Radio Wales Breakfast that his conditions had deteriorated to a point where he can no longer feed himself. |
| Motor neurone disease is an uncommon condition that mainly affects people in their 60s and 70s. | Motor neurone disease is an uncommon condition that mainly affects people in their 60s and 70s. |
| Kyle was diagnosed with MND on 17 January - almost a year after his mum Melanie first noticed symptoms. | Kyle was diagnosed with MND on 17 January - almost a year after his mum Melanie first noticed symptoms. |
| "He wasn't walking straight and was using one arm to support the other," she said. | "He wasn't walking straight and was using one arm to support the other," she said. |
| Kyle was initially taken to the Royal Glamorgan Hospital in Rhondda Cynon Taf for tests followed by an MRI scan. | Kyle was initially taken to the Royal Glamorgan Hospital in Rhondda Cynon Taf for tests followed by an MRI scan. |
| Doctors initially thought he had enterovirus which is an infection that can cause illness in babies, children, and teens. | |
| Kyle's family have started a fundraising page to raise awareness about MND | Kyle's family have started a fundraising page to raise awareness about MND |
| But his family became concerned when his condition began to deteriorate further. | But his family became concerned when his condition began to deteriorate further. |
| "In October his right arm started to become a bit shaky. By November he was struggling to walk up the stairs," his mum said. | "In October his right arm started to become a bit shaky. By November he was struggling to walk up the stairs," his mum said. |
| Kyle's aunt Heather thought it was MND after researching the symptoms, but it still came as a "massive shock". | Kyle's aunt Heather thought it was MND after researching the symptoms, but it still came as a "massive shock". |
| "With the tears that have been spilled the last few months it's been like a river," said Heather. | "With the tears that have been spilled the last few months it's been like a river," said Heather. |
| Kyle uses a VR headset to watch films and play games with his older brother as it does not require his hands | Kyle uses a VR headset to watch films and play games with his older brother as it does not require his hands |
| Kyle needs support when eating and walking and has spent the past few weeks at Noah's Ark Children's Hospital in Cardiff. | Kyle needs support when eating and walking and has spent the past few weeks at Noah's Ark Children's Hospital in Cardiff. |
| Heather said it was "unbelievable" he was so cheerful, which was having a positive impact on the rest of the family. | Heather said it was "unbelievable" he was so cheerful, which was having a positive impact on the rest of the family. |
| "I don't think a lot of children would react in the same way. He is an inspiration," she said. | "I don't think a lot of children would react in the same way. He is an inspiration," she said. |
| The teenager spends his time playing games with his family including Connect Four, and has a VR headset that allows him to watch films hands-free. | The teenager spends his time playing games with his family including Connect Four, and has a VR headset that allows him to watch films hands-free. |
| Kyle loves a game of Connect Four, but needs help with the counters as his arms have limited mobility | Kyle loves a game of Connect Four, but needs help with the counters as his arms have limited mobility |
| His family said they felt "really positive" after discussions were held about a clinical trial which could slow down the disease. | His family said they felt "really positive" after discussions were held about a clinical trial which could slow down the disease. |
| But they were left "devastated" after it was put on pause. | But they were left "devastated" after it was put on pause. |
| The family said they felt there was "no hope" without the trial, according to Heather. | The family said they felt there was "no hope" without the trial, according to Heather. |
| "It will make a difference. I'm hoping because he is so young he has the energy to fight it," she added. | "It will make a difference. I'm hoping because he is so young he has the energy to fight it," she added. |
| Heather said the response from the community had been "absolutely outstanding" with people setting up fundraisers "left, right and centre". | Heather said the response from the community had been "absolutely outstanding" with people setting up fundraisers "left, right and centre". |
| "One lady even offered a luxury caravan the family can use to spend some time with Kyle. It's been amazing. I can't get over it," she said. | "One lady even offered a luxury caravan the family can use to spend some time with Kyle. It's been amazing. I can't get over it," she said. |
| What is MND? | What is MND? |
| MND is a relatively rare condition which is most common in people over 50, but adults of any age can be affected. | MND is a relatively rare condition which is most common in people over 50, but adults of any age can be affected. |
| A person's lifetime risk of developing MND is one in 300, according to the MND Association. | |
| MND affects up to 5,000 adults in the UK at any one time. | MND affects up to 5,000 adults in the UK at any one time. |
| A person's lifetime risk of developing it is one in 300. | A person's lifetime risk of developing it is one in 300. |
| Source: NHS |