26 Jun Dad to run Half Marathon for local children’s charity
by Dan Bryans
A father whose baby son has a debilitating condition is raising funds for Haven House Children’s Hospice by running the Royal Parks Half Marathon later this year.
One-year-old Ollie Taylor was born with Spinal Muscular Atrophy (SMA), a rare genetic neuromuscular condition that causes muscle weakness and progressive loss of movement.
His parents, Vicky and Jason – who previous lived in Woodford and now in Cheshunt – didn’t realise anything was wrong until after the birth.
“The diagnosis came as a massive shock; it’s not something you ever think could happen to your child,” Jason said.
Ollie can’t walk and his respiratory system is affected most by the condition. He finds it very hard to breathe and uses a bipap respirator.
His parents were referred to Haven House before Christmas last year when Ollie was in hospital. He developed three infections and it was touch and go.
His condition eventually stabilised, but they still needed support in order to have the confidence to take him home.
You can help Haven House support more families like Ollie and Jason by making a donation to Haven House at: havenhouse.org.uk/donate.
