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Rio’s story: “I don’t know where I would be without the support from my children’s hospice.”

Rio and his Mum Nikki smiling, pulling faces and having fun

Happy, giggly Rio is nine and lives with his mum Nikki. He was born with Downs Syndrome and has major development difficulties that include heart problems, visual and hearing impairments, and learning difficulties. Rio also has a weak and floppy windpipe, a condition known as Tracheobronchomalacia, so he has to be ‘PEG fed.’ This means all his fluids, nutrients and medicines are taken straight into his stomach, which Nikki has to monitor and manage this very carefully.

As a single mum giving complex round-the-clock care to her son, Nikki relies heavily on the support from Andy’s, her local children’s hospice. But to begin with Nikki wasn’t sure about getting in touch with the hospice.

“I knew nothing about the hospice and how it could help and I couldn’t understand why I was being sent there, I was distraught and scared.” But after a nurse and a warm welcome from the staff at Andy’s she understood how much the hospice could aid her and Rio.

“Rio loves the hospice and I feel so safe that he is there and being looked after.”

Rio's Mum Nikki

Pre-Covid, Rio was able to stay at the hospice overnight regularly giving Nikki the chance to sleep and recharge her batteries. “Rio loves the hospice and I feel so safe that he is there and being looked after.”

When lockdown struck, Nikki found herself alone and struggling to cope. To add to her struggle, she had to have a very painful knee replacement that needed 62 staples and it became infected. “Rio doesn’t sleep at night much so I am lucky if I get four hours of consistent sleep.”

The services she can access Andy’s children’s hospice have become a lifeline.

Nikki says that she does not know where she would be without the continued support of Andy’s. Nikki says she’s often overwhelmed by the level of care Rio receives and loves the fact he is happy there.

There are no limits to what the children’s hospice team at Andy’s will do for a family like Rio’s.

But right now, children’s hospices around the UK 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 and start fundraising.

When you push yourself to your limits this Children’s Hospice Week, you can make sure children’s hospices are not pushed to theirs.

Your fundraising will mean that families like Rio’s will always have the support they need to make precious memories together.

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

Family stories