THE family of a Sonning Common boy with a rare neuro-muscular disease is appealing for money to refurbish the children’s hospice he attends.
Annabelle and Kevin Jarvest’s son Dylan, seven, has mitochondrial myopathy and has been visiting Helen House in Oxford for just over a year.
The Helen and Douglas House charity needs another £500,000 to pay for the £1.5 million refurbishment of the hospice.
The Jarvests, who live in Sedgewell Road and have another son Charlie, 13, say Dylan enjoys visiting Helen House, where he uses the playroom and gardens.
His favourite activities are music therapy and visiting the spa.
Mrs Jarvest said: “They are on top of his list and they help him express himself. He even made an original song for me recently. The spa is great for him to do hydro-exercise. It is such fun he doesn’t realise that it is exercise, not just playtime.”
It is 30 years since Helen House opened as the world’s first children’s hospice and the facilities need to be modernised.
Mrs Jarvest said: “It is such a wonderful place which the whole family enjoys coming to, giving us vital help and support. However, it does need updating.” Improvements will include piped oxygen in all the rooms and wider corridors and spaces so larger, modern wheelchairs and beds can be moved around.
The spa, music, art and play areas as well as the kitchen and dining areas will be refurbished and there will be a new dedicated teaching space for the children to continue their lessons during their stay.
Helen and Douglas House has received £436,000 from NHS England and has raised £500,000 through donations since the appeal was launched at the end of last year.
Janet Carruzzo, community fund-raiser, said: “We would like to thank everyone who has made a donation.
“We need to raise the final £500,000 by the end of the summer to complete the work to ensure our families can enjoy the most up-to-date facilities when they come and stay with us.”
To make a donation, call 01865 799150, email fundraising @helenanddouglas.org.uk or visit www.helenanddouglas.org.uk