A dad who gave up his job to look after his baby son who can’t walk because of a rare neuromuscular condition is raising money for his care.

One-year-old Ollie Taylor, who was born with Spinal Muscular Atrophy (SMA), is being cared for at Haven House Children’s Hospice, in Woodford Green.

His rare genetic neuromuscular condition causes muscle weakness and progressive loss of movement.

Dad Jason will be running the Royal Parks Half Marathon later this year to say thank you to the hospice and help continue its work.

Jason and mum Vicky, didn’t realise anything was wrong with Jason until after his birth.

Jason said: “The diagnosis came as a massive shock; it’s not something you ever think could happen to your child.”

Ollie’s respiratory system is affected most by the condition. He finds it very hard to breathe and uses a bipap respirator.

Jason said: “It’s very difficult for our daughter, Millie, who is 5. She knows Ollie isn’t well and asks when can he take the mask off?”

Ollie often needs oxygen, a nebuliser and a suction machine to remove build-up of fluids.

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” before his condition eventually stabilised.

Jason said: “Ollie’s breathing can deteriorate rapidly which means we are always on guard as parents.

“Being able to use Haven House has helped keep our family together.

“Vicki and I have both given up our jobs to care for Ollie. We wouldn’t have survived without financial support from our family and friends.

“Haven House provides its care at no cost to families, which is why we are fundraising for the hospice so they can support other families.”

To make a donation to Haven House, visit: havenhouse.org.uk/donate.