Eleanor’s story

With big blue eyes and a cheeky smile, Eleanor was the much loved first child for proud parents Paul and Dee. Born at 39 weeks after a healthy pregnancy, she was discharged from Chesterfield hospital at a couple of days old.

Eleanor’s mum Dee explains: “She was just amazing; a really alert and lovely little girl. We had our first family Christmas soon after we got home. That was a really special time for us.

“It wasn’t until I started to go to mum and baby groups that I started thinking something could be wrong,” explains Dee. “I noticed that other babies were kicking their legs while Eleanor was very still. A little bit of doubt started to creep in.”

Eleanor was diagnosed with Spinal Muscular Atrophy (SMA) Type One – a genetic neuromuscular disease which affects nerves responsible for muscle function. Type One is the most severe and children affected rarely live past their second birthday; at present there is no cure.

Paul, Eleanor’s dad, said: “It all felt very surreal. We didn’t know how long we would have Eleanor with us – possibly for a year, but some children can live longer.”

The family were helped by SMA Support UK, as well as a team of NHS carers, including a specialist community nurse, a physiotherapist and genetics counsellors.

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 absolutely loved things like bath time and walks in her pram.

Eleanor started struggling to feed and Paul and Dee had to be trained to tube feed her. Despite this setback, they were determined to make the most of their time together and managed to go on holiday to Devon, where Eleanor went swimming for the first time and visited a zoo and the beach. “That week was absolutely lovely and it was amazing to have that time together,” said Dee.

Shortly after her six month birthday, Eleanor started to struggle with her breathing and had to be admitted to a high dependency unit with a suspected chest infection. After two weeks, the family 20410159435chose to have Eleanor transferred to Bluebell Wood.

Dee explains: “The hospital was loud and busy. Eleanor wasn’t herself, and frequently became very upset. We had already talked about end of life care and decided we wanted Eleanor’s last days to be at Bluebell Wood; somewhere we could be together as a family in more relaxed surroundings.”

The parents knew that Eleanor didn’t have long left and worried that their first night at the hospice would be their last with her. Dee said: “We all cuddled up together on a big bed, expecting the worst. But the next morning Eleanor woke up all bright eyed and smiling. It was a real ‘wow’ moment, and we can only put it down to her (and us!) being more relaxed.

“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 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.”

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Eleanor lived at Bluebell Wood for seven weeks and in that time grandparents, family and friends visited often. “We could all be close to her – we could be vaguely normal. We even went out to have coffee together as a family; something we couldn’t have done if Eleanor was still in hospital,” said 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.”

For two weeks afterwards, Paul and Dee stayed in one of the hospice’s end-of-life suites, with Eleanor in a special room next door. They, and all of their family, were able to say goodbye in their own time.

There is now a pebble with Eleanor’s name on in the Bluebell Wood memory garden, and the family continue to visit the hospice regularly. Dee said: “Bluebell Wood feels like a home from home. When I come here, I feel at peace.

“We don’t know what we would have done without Bluebell Wood. The worst situation imaginable was made just that bit better by being able to come to Bluebell Wood.”