The government must fund, not fail lifeline care for children like Ella who died too young
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Ella was just three months old when she suffered a seizure and was rushed to hospital. After a night of tests she was diagnosed with a rare genetic disorder called Miller-Dieker Syndrome. Life would never be the same again – Ella would never hold her own head, sit, walk or talk, and required around-the-clock care for the rest of her life.
Her parents were devastated, and while they knew Ella's life would be short, they were determined to make it the best life they could. Ella’s mum Kirsty says:
“The first few months were terribly hard – we had to learn to understand medical procedures, juggle multiple appointments, deal with seizures every day, manage medicine, and come to terms with everything, all while trying to give Ella a happy life.”
Ella’s parents were then introduced to Acorns Children's Hospice, a charity which provides specialist palliative care and support across the West Midlands. Kirsty says:
“Acorns was amazing, and helped us to get the most out of Ella, whilst supporting us as parents. As Ella had to be watched all night, we often didn’t get much sleep, so Acorns offered us respite and Ella would have fun at a sleepover with other children.”
As Ella got older, her condition became more difficult until, two years after her initial diagnosis, she was admitted to hospital with a severe chest infection and pneumonia in both lungs. Just after midnight, whilst in her sleep, with her patents at her bedside talking to her, Ella passed away. Kirsty says:
“When Ella passed, we found out how special Acorns really was. They thought of everything and made it so much easier whilst supporting us as well as our family and friends. Even now we are still very much included in the Acorns family and they will always be a part of our lives which is important to me as part of remembering Ella.”
But Acorns, and other children’s hospices like them across the country, rely on donations from the public to operate. Kirsty says:
“I was surprised to find that children's hospices only receive limited financial funding from the government and NHS, and this funding is falling. Without financial support being maintained by government and the NHS, the fantastic support we received from Acorns may not be available to many other children and families when they most need it.”
Together for Short Lives is the UK charity for children’s palliative care. Join Kirsty by signing our petition which asks the government to use some of the recent 3.4% NHS funding boost to:
- increase the NHS England Children’s Hospice Grant to £25million
- bring about parity of funding between children’s and adult hospices in England
- put in place a funded children’s palliative care strategy
Find out more about the current state of children's palliative care funding and see why this petition is important.
When you've signed the petition click here to tweet your local MP asking them to fund, not fail the lifeline palliative care services for seriously ill children.
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