Ollie was born in March 2016 with Spinal Muscular Atrophy (SMA). It’s a rare genetic neuromuscular condition that causes muscle weakness and progressive loss of movement. His parents, Vicky and Jason, didn’t know anything was wrong until after Ollie was born. As he is their second child they thought it would be plain sailing, but Ollie became unwell soon after birth and the family has been on a rollercoaster ever since.      

It started with chest infections which became harder and harder to shift. The trips to hospital became more frequent. The doctors started doing tests, but everything came back clear. Then at six months old in September 2016 Ollie got so unwell that his whole body began to shut down. He was rushed to the Royal London Hospital and admitted to intensive care. After more tests the doctors finally diagnosed him with SMA Type 1.

Ollie case study

Jason says:

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

Ollie can’t walk and his respiratory system is affected most by the condition. He finds it very hard to breathe which is why he needs to use a bipap respirator. He often needs oxygen, a nebuliser and a suction machine which removes build up of fluids. He’s on an array of medication and is tube fed through his nose.

Jason says:

It’s very difficult for our daughter, Millie. She knows Ollie isn’t well and asks when can he take the mask off?

Jason and Vicky were referred to Haven House before Christmas 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.

Ollie’s breathing can deteriorate rapidly which means Jason and Vicky are always on guard as parents. The hospice has provided them with step-down care where they could be with Ollie and stay in the family flat. It has made Jason and Vicky confident with Ollie's equipment and independent.

At Haven House Millie receives one-to-one support with Babs which gives her time and space to share her thoughts about her brother’s health. Haven House allows Ollie to do the things which he loves such as music therapy sessions with Maeve. This helps him develop co-ordination and his face lights up when she sings to him. He also enjoys the specialist spa bath at the hospice.

Jason says:

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.

Ollie is doing really well at home at the moment but Vicky and Jason know the future is uncertain. The diagnosis means he is likely to deteriorate further and they take each day as it comes knowing that his life is shortened.

Jason says:

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.

Jason concludes:

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 you can support this vital charity too.

Help us support more children like Ollie and their families by making a donation to Haven House.

Read more of our family stories.