William is Paul and Michelle’s ‘miracle boy’. Before he was born he had a stroke and spent the first nine months of his life in hospital. Despite facing so many challenges, William has never stopped smiling, and he loves coming to Bluebell Wood. Michelle shares his story:

“We had problems very early on with William. He was a twin, but we lost his twin around 11 weeks into the pregnancy, when he had his first stroke. The doctors told us that William also had problems with his brain and bowels and that he didn’t have a good chance of surviving, but we decided to carry on with the pregnancy.”

Late in her pregnancy, Michelle developed preeclampsia and HELLP syndrome, and her organs started to fail. Michelle said, “At first I didn’t say anything because I thought the longer I kept William in, the better chance he would have of surviving. Then the doctors said they would have to deliver him in the next six hours or we would both die.

“When William was born he was so small and frail. He’d been born very premature at just 27 weeks, and weighed only 535g. During those nine months in hospital we kept being told he wasn’t going to make it. Even after he was discharged, he was still really poorly – he was fed through a tube, and had around 300 seizures a day.

“It was his epilepsy nurse who suggested Bluebell Wood. I’d never been to a hospice and at first I thought it was where you took your child when you’d given up on them, but I was wrong. Coming here is like walking into a home – it’s such a relaxing place. Everyone is so understanding too. We don’t get the stares we get elsewhere – everybody knows William here.

“William had a major stroke in 2017, and during that time Bluebell Wood was invaluable. He spent five months in hospital, and because our house wasn’t quite ready for him at Christmas Bluebell Wood allowed us to stay there. It gave us chance to have a proper night’s sleep, in a bed that wasn’t right next to William. One of the nurses took him in the soft play room, and worked with him to get him crawling for the first time since his stroke.”

William and his family have also been supported by the hospice’s Physiotherapist, Lesley. She said: “William has uneven muscle tone, and although he can walk a little bit he can be quite unsteady. I’ve supported his family with a few different bits of equipment over the years and helped make sure they suited his needs. I’ve helped them apply for funding for his adapted wheelchair, and just make the process that little bit less daunting.”

William also comes to Bluebell Wood for music therapy once a week, which Michelle says has made a huge difference: “The first time I came with William I didn’t really know what music therapy was – I just thought he’d play a few instruments. It wasn’t until his second session, that I really got it. He was like a different boy – I heard him making sounds he’d never made before, he was making eye contact and interacting. It’s not something we’d have even been able to consider doing privately, but we’re so lucky it’s provided at Bluebell Wood.

“Since he was born we’ve nearly lost William so many times. Bluebell Wood helps us focus on the now. It’s the only break we get as parents, and we know he loves it here. It really is our saving grace.”

 

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