Thursday, 11 August 2022

Family of boy with rare disease complete charity run

THE parents of a boy with a rare muscle-wasting disease have raised more than £325 for

THE parents of a boy with a rare muscle-wasting disease have raised more than £325 for the hospice where he receives care.

Kevin and Annabel Jarvest, of Ashford Avenue, Sonning Common, took part in the Rainbow Run in Prospect Park in Reading, which involves completing 3km while being doused in powdered paint.

They were raising money for Helen and Douglas House in Oxford, where their eight-year-old son Dylan receives care after being diagnosed with mitochondrial myopathy.

The couple were joined by their other son Charlie, 14, and Mrs Jarvest’s mother Pam Hobbes while Dylan himself got out of his wheelchair to finish the race on his feet.

Mrs Jarvest, 31, said: “Dylan really enjoyed it, especially when he got to let off the klaxon to start the race, and we were all covered in paint by the end.”

Mr Jarvest, 35, a roofer, said: “I really enjoyed it. I did it once and then went back, met Dylan and came back with him. He got out of his wheelchair just for the last bit as he didn’t want to do it in his chair.”

Four staff from Peppard Primary School, where Dylan is a pupil, also took part in the race. Fiona Hilton, Jess Tillotson, Kirsty Wall and Ella Glynn raised more than £300. The Rainbow Run is so called because it mirrors the ethos of the charity, celebrating happiness and living life to the full.

Mrs Jarvest said: “I would like to say a massive thank-you to everyone who took part and everyone who sponsored them. The money raised will make a huge difference to the lives of families like ours. It’s great that we raised the money plus there is more coming in.”

The Jarvests have been attending the hospice since 2013, three years after Dylan was diagnosed. As well as providing respite care, the charity has support groups and offers counselling.

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