A COUPLE whose son has a rare muscle-wasting disease are to help raise money for a children’s hospice
A COUPLE whose son has a rare muscle-wasting disease are to help raise money for a children’s hospice where he receives care.
Annabelle and Kevin Jarvest, of Ashford Avenue, Sonning Common, will take part in the Rainbow Run at Prospect Park in Reading on June 21 which involves completing a 3km course while being covered with “paint”.
They will be running in aid of Helen and Douglas House in Oxford, where their eight-year-old son Dylan receives care after being diagnosed with mitochondrial myopathy five years ago.
Dylan will also take part in the run together with his brother Charlie, 14.
Despite his condition, he can still do exercise and he enjoys playing sport at Peppard Primary School.
Mrs Jarvest, 31, said: “To the untrained eye Dylan looks normal and he likes to try to keep up with his peers but when he is doing physical things and using energy it takes it out of him quickly.
“His lungs work at 60 per cent of normal capacity and that’s only going to reduce. He does not get enough oxygen into them and then lacks energy.”
Dylan plays school sports in short bursts. He said: “I like cricket, which we do at school sometimes. My favourite part is batting — it’s good to hit the ball. I also like football. We sometimes do it in lessons but I play at lunchtime as well. We just play together and have fun.”
He likes staying at the hospice with his family. He said: “Everything they offer is enjoyable, especially the spa facilities and the music room. I like playing on the drums and piano. I like make up songs.”
Mrs Jarvest added: “We’re quite a close-knit family so we go and stay there together. We will stay in one room upstairs and Dylan will be in another room downstairs.
“Charlie does not get as much attention as his brother and Helen and Douglas House helps us to give him some attention as well. Initially, I was against the idea of using the hospice but as soon as I went there it was a weight off my shoulders.
“The people there understand the care that is needed. It’s unbelievable what a good service of care they provide.”
As well as providing respite care, the charity supports the family in other ways, such as support groups and counselling.
Mrs Jarvest said: “Social workers help us to organise Dylan’s curriculum as he has reduced time at school because of his disease.
“The support group for Charlie is invaluable and allows him to spend time with other people in a similar situation.”
She urged people to support the family or to take part in the run themselves. “By donating you help our family,” said Mr Jarvest. “Plus it’s a great thing for us to do together as a family and something a bit different.”
The organisers says the run is about enjoying a colourful, fun day with friends, family or work colleagues to raise money for charity.
Runners, joggers and walkers of all ages will be showered from head to toe with colours of the rainbow at different points along the 3km course. The paint is made from a safe and biodegradable form of corn starch.
The event begins at 11am and places cost £12 for children under 14 and £17.50 for anyone 14 and over. To sign up, visit www.hdh.org.uk