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Charlie’s Story: Creating precious memories

Children’s hospices provide vital support for children and young people with a life-limiting or life-threatening condition. Everything they do is #ForTheChildren – helping families make the most of their lives together, no matter how short.

This Children’s Hospice Week we are showing how important each individual child is to the amazing local hospices who care for them. They provide a lifeline #ForTheChildren like Charlie and his family.

Unimaginable decisions 

Charlie, son to Andy and Sarah, was diagnosed Spinal Muscular Atrophy Respiratory Depression, a rare life-threatening condition when he was tiny. It should have been a happy time for the family as Sarah was also pregnant with another son, Thomas, but Charlie’s sudden diagnosis had serious implications for their unborn baby.

“The outcome wasn’t good as Thomas had the same condition as his brother, and while we were trying to make difficult decisions about Charlie, we were also faced with the death of Thomas who was born asleep,” explained dad Andy.

Claire House Children’s Hospice was there for Charlie’s family, helping them to face the unimaginable throughout Charlie’s short life. They helped Charlie’s family to make the most of their brief time with their son, creating memories through a bucket list. It started with simple things like a trip to Costa Coffee, but as Andy says,

“The list grew longer and longer the more we realised what was possible thanks to Claire House. With their support they took Charlie swimming in hospice hydrotherapy pool where he was slapping around in the water. He experienced ‘the beach’ when they brought sand into intensive care for him to touch for the first time, we had endless photos taken and made keepsakes with Charlie’s hand and footprints.” And after Charlie left hospital he had a special party at the hospice – it was unforgettable. Simple things became so important, like wanting Charlie to “feel the wind on his face and rain on his skin.”

Everything the hospices does is #ForTheChildren – like Charlie.

When the family knew that time with Charlie was short, Claire House pulled out all the stops to create the final, perfect day for the family. The family moved into Claire House and the team arranged a visit to the Blue Planet aquarium, the one trip on the bucket list they hadn’t yet ticked off.

“That morning we woke up, the three of us, after spending our first night in 10 months together in the same bed. The staff at Claire House left us alone but we felt safe in the knowledge that they were on hand if we needed them, however we knew the clock was ticking,” said Andy.

“We were driven to the Blue Planet, the nurses stayed with us in case anything happened and it was such an enjoyable day that we didn’t want it to end so we asked Laura [the hospice nurse] to take us through the drive through at McDonald’s on the way back so we could stretch the time out just that little bit longer.”

Charlie passed away later that day in his parents’ arms and the family stayed at the hospice for another week to be supported by the nursing team and bereavement counsellors. Charlie was just 17 months old.

I said from the word go that I would never let my son suffer and Claire House helped us to make sure the end of Charlie’s life was peaceful and pleasant.

Charlie's dad Andy

“I’m struggling a lot right now but, even with everything that’s going on, Claire House is still helping us. Without places like this, our situation would be close to impossible. It needs to carry on, it’s so important” added Andy.

Children’s hospices like Claire House Children’s Hospice provide vital support for children and young people with a life-limiting or life-threatening condition. Show your support #ForTheChildren this #ChildrensHospiceWeek.

Family stories