“The support Claire House provides is invaluable.”
Stephen’s mum, Simone, shares his story and how Claire House has helped them to make wonderful memories.
Smiling from ear to ear as he belted out his favourite Moana song, my beautiful boy couldn’t have been happier.
We were at a music session at Claire House Children’s Hospice and this was just one of the precious moments I never thought I’d see.
As well as Down’s syndrome, my son Stephen suffers from a host of complex medical conditions, which affect his heart and breathing.
We were told there may be something wrong with his heart when I was 37 weeks pregnant, although we tried our best to be optimistic.
But from the moment he arrived, I knew there was a problem.
Unlike when his three older brothers were born, Stephen was limp and pale, and doctors rushed him away.
At just eight days old he needed a life-saving heart operation.
Our world collapsed as we were told to prepare for the worst and we agonised for the whole 10 hours he was in surgery.
However, despite complications, our little fighter pulled through.
Stephen spent most of his first three years in and out of hospital. But every time he picked up another infection, our little miracle fought it.
We’d heard about baby and children’s hospices in hospital, so once we were home I contacted Zoë’s Place Baby Hospice in Liverpool. The team were so good with Stephen and helped by offering respite and day care.
When he was almost five, we knew he needed somewhere for older children, so we contacted Claire House in Wirral.
At first, I was worried about whether he would settle in, but when we met the team and saw all the happy children, I knew I had nothing to worry about.
Stephen loves coming to Claire House. He has so much fun in the hydrotherapy pool and at play sessions. The staff take care of his medical needs, so I can switch off and get a good night’s sleep while someone else gives him oxygen.
And knowing Stephen is well cared for means I can also spend some quality time with his older brother.
When you have a child, being a mum is your main priority, but Claire House helps me remember that being a full-time carer isn’t my only identity.
Watching Stephen reach so many milestones – doing things we never thought possible – leaves me in tears of happiness. He started walking when he turned five and now there’s no stopping him!
Every day we have with Stephen is special – I’m amazed by everything he can do.
And the support Claire House provides is invaluable.
I’m so grateful to the staff for helping us to make wonderful memories.
They know it is so important to make every moment matter and, as for Stephen, he knows Claire House is a place to make as much noise as he can in the music therapy sessions and have fun.