‘Acorns was amazing, and helped us to get the most out of Ella, whilst supporting us as parents’.
From Together for Short Lives: 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.”
Read more about Ella