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Ollie’s story: “We can’t leave Ollie alone even for a few seconds”

Boy smiling with paintbrush

Nine-year-old Ollie lights up the room and has the biggest, most infectious smile in the world. But his parents Vickey and Adrian also live with the knowledge that he could die at any moment.

He has a condition which means that any of his muscles – including his lungs and heart – can suddenly stop working at any time. He doesn’t sleep that much, so his parents have to take turns to be with him all the time. They feed him and give him the medicines he needs every day to keep him alive.

“He needs constant attention and care. And I really mean constant…” stresses his mum Vickey, “We can’t leave him on his own even for a few seconds.”

Only chance to relax

Ollie has been going to his local children’s hospice, Naomi House for respite care since 2018. Naomi House is the only place the family can go where they know there’s someone they can trust to take over Ollie’s care. This is often their only chance to relax, focus on Ollie’s little sister Lisi and get a full night’s sleep.

“The times we’ve had at Naomi House have been some of the most precious for us. Ollie and Lisi get to play together, and we all go swimming as a family in their hydrotherapy pool – the only pool Ollie has ever used. We’ve had moments of fun, joy, laughing and getting messy that we’ll always remember and cherish.”

Without support

During the first lockdown, the family weren’t able to leave their house at all. The risks were too great – Ollie might not survive if he caught the virus. But without their much-needed respite stays at Naomi House, Vickey and Adrian were utterly exhausted.

Naomi House is our sanctuary, our refuge. When we feel like we’re sinking so much of the time, Naomi House keeps us afloat. That’s why, honestly, the last few months have been sheer hell without them.

Vickey, Ollie's mum

At the end of lockdown the Naomi House nurses got in touch to invite Ollie for his first stay at the hospice in ages. Vickey was so happy to hear he could go back to Naomi House where he would be fussed over, played with and cared for immaculately. “You don’t know how important things are until they’re gone. Naomi House is a part of all our lives and we’ve missed it desperately.”

Pushed to the limits

There are no limits to the support that families like Ollie’s need from children’s hospices like Naomi House.

But right now, hospices are being pushed to their limits. More and more families need their help – and that’s why we need you to push yourself to your limits by fundraising or making a donation directly today.

Will you push yourself to your limits, so children’s hospices aren’t pushed to theirs?

Family stories