News & stories Super dad Jason! A father whose baby son has a debilitating condition is raising funds for Haven House 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. Jason said: “It’s very difficult for our daughter, Millie. 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 which removes build up of fluids. The one-year-old is on an array of medication and is tube fed through his nose. His parents were referred to Haven House before Christmas in 2016 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. Jason said: “Ollie’s breathing can deteriorate rapidly which means we are always on guard as parents. The hospice has provided us with step-down care where we could be with Ollie and stay in the family flat. It has made us confident with his equipment and independent. “Being able to use Haven House has helped keep our family together. We also receive home visits from Haven House’s healthcare support workers and nurses, which helps maintain our confidence and reassures us that we are doing our best for Ollie. “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. “In October I am running the Royal Parks Half Marathon for Haven House as a small way of saying thank you for all the support they continue to provide for Ollie and my family. I hope more people can support this vital charity too.” Please help us support more families like Ollie and Jason by making a donation to Haven House.