Bluebell’s story

Bluebell is a little ray of sunshine.

Even as a baby the nurses at the hospital would visit to get their daily dose of Bluebell. She’s been on quite the journey in her short life, making her big smiles all the more precious.

Bluebell was born with exomphalos major, meaning some of her organs were on the outside of her body. This very rare life threatening condition affects just one in 5,000 babies born.

At Acorns, we are here to help Bluebell and her family enjoy time together in a safe space. Her mum Stella explains:

“We were in hospital for a long time after Bluebell was born. Doctors said we had to wait until she was one to operate so we had long stays in hospital and multiple times we were told to say goodbye. But Bluebell was strong and fought through.

“After her operation, Bluebell still required oxygen to help her breathe and was fed by a tube so needed nursing care at home. I couldn’t take her to the usual mums and toddler groups because we were in and out of hospital so much. And, if I’m honest, I wanted to keep her safe.

“It was our community nurse who referred us to Acorns. She recognised that we were becoming quite isolated and lonely.”

“I’ve honestly been amazed by the support that they offer at Acorns. Every staff member truly cares about you and your child, and they’ve built a lovely connection with Bluebell. It’s priceless having someone you can trust to look after your child when they need extra care.”

“They look after all of us in the family too. Before Acorns, we had been living our lives separately almost. My husband Mike and son Gabriel would do their own things together. Bluebell and I would do ours, our own meals.

“But at Acorns, we are able to do things as the four of us. We have been for hydrotherapy sessions in the pool. It’s wonderful to see Gabriel have time with his sister. It’s something just for them which is really special.

“The support has been invaluable for me as well. It’s been a lifeline to talk to other people. To provide constant care can be quite a toll on you. To talk to others in the same situation helps so much. Without those people and meet ups I would have felt quite lonely.

“As Bluebell has grown her speech, walking, eating, and drinking are all coming along, and the Acorns Nurses have been really supportive in all of these milestones.”

“The support Acorns has provided has helped Bluebell develop and given her the opportunity to do things that many two-year-old girls enjoy. She’s just an amazing little girl and we know she’ll do a lot with her life.

“I’m so grateful that Acorns has been there for us. The staff have been incredible and so caring. I can’t express in words what it means to have them there. I think we will just always be thankful that we have had them in our lives.”

Help support us

Hundreds of local babies, children and young people rely on Acorns Children’s Hospice for specialist 24-hour care and support. In turn, Acorns relies on people like you to fund the majority of our services. Your support with any charitable donation you can make is vital in helping us to continue the work that we do.

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For more information or for interview, photograph or filming opportunities, contact the PR and Communications team at news@acorns.org.uk.

Notes to editors:

Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.