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Motor neurone disease: Pontypridd boy, 13, diagnosed with condition

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.

The family said they felt there is “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.

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 so the family can use to spend some time with Kyle. It’s been amazing. I can’t get over it,” she said.


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