To mark Children’s Hospice Week (May 23-27) two families have shared how Bluebell Wood Children’s Hospice has helped them through the very difficult times they face.
This year, the national campaign is focusing on getting the right support for the whole family so they can treasure their time together.
Adam Salt, from Chesterfield, comes to stay at Bluebell Wood with his mum, dad, and little sister, Isla, for short breaks.
Adam, who is nine years old, has quadriplegic cerebral palsy, chronic lung disease and uncontrolled epilepsy. As Adam has grown, his condition has worsened, as his chest and lungs are damaged due to the amount of chest infections he has endured.
When he stays at the hospice, Adam enjoys arts and crafts, going in the Jacuzzi, music therapy and trips into the garden.
Adam’s mum Kerry said: “We’ve been coming to Bluebell Wood now for several years and it really feels like we’re part of the family.
“We treat our stays like a mini break and it means we can do things with Isla that we can’t normally do. Usually I live my life round time; what time Adam has his medicine, or his hospital appointments. For someone else to get his drugs ready, means I can relax and get to do the nice Mummy bits rather than the nursing bits.”
Kerry also finds it really helpful and supportive to speak with other Bluebell Wood families experiencing similar emotions.
“You sometimes feel very isolated at home, so meeting other families at the hospice reassures us. Bluebell Wood is a support network; we really feel like we belong.”
Eleanor Brown, from Sheffield, was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 – a genetic neuromuscular disease which affects nerves responsible for muscle function – at just a few months old.
For several months Eleanor remained a happy and seemingly healthy baby. While she couldn’t sit up or roll over because of the weakness of her muscles, she was a little fighter who loved things like bath time and walks in her pram.
When she was six months old, Eleanor was admitted to hospital with a suspected chest infection – a very serious problem for a baby with SMA. When it became apparent that her condition was worsening, the family chose to have Eleanor transferred to Bluebell Wood.
Eleanor’s mum Dee explained: “We wanted Eleanor’s last days to be at Bluebell Wood; somewhere we could be together as a family in more relaxed surroundings.
“At Bluebell Wood, we could be Eleanor’s parents again, rather than watching other people look after her. We had some really special times – the nurses organised for us to go to the local Butterfly House and we often walked around in the Bluebell gardens with Eleanor in her pram. It was great to just be a family again, but with experts on hand when we needed them. Eleanor was much happier and seemed back to her normal self.”
Eleanor lived at Bluebell Wood for seven more weeks and, in that time, grandparents, family and friends visited often. “We could all be close to her – we could be vaguely normal,” added her dad, Paul.
When Eleanor died, aged just seven months, she was cuddled up with Paul and Dee. Dee said: “She slipped away so very peacefully. We had all the feeding and oxygen tubes removed so she was just our beautiful Eleanor.”
After she passed away, Paul and Dee stayed in one of the hospice’s end-of-life suites, with Eleanor in a special room next door. This meant that they, and all of their family, were able to say goodbye in their own time.
Claire Rintoul, Chief Executive of Bluebell Wood Children’s Hospice, said: “We are here to make sure that every moment really does count for all of our 250 children and their families who are facing very tough times.
“Bluebell Wood is a place filled with love and laughter. We are here to help families relax, have fun and spend precious time together with the help and support of our fantastic Care Team.”
It costs more than £4m to run Bluebell Wood Children’s Hospice, providing support both at the hospice and in the community. To help Bluebell Wood make more memories for the 250 children we care for, please visit www.bluebellwood.org.
For further details about Children’s Hospice Week Click here