To mum Kirsty, baby Ella was the “perfect, healthy little bundle of joy” when she arrived. “We called ourselves the three bears” says Kirsty; “mummy bear, daddy bear and baby bear. But as Ella got older she became known to everyone as Ella Bear.”
At three months old it became apparent there was something wrong with little Ella. After suffering her first seizure she was rushed to Gloucestershire Royal Hospital. A full night of tests revealed she had a rare genetic disorder called Miller-Dieker Syndrome.
“As soon as she was diagnosed, we knew life would not be the same again. Ella would never be able to hold her own head, sit, walk or talk and would require around-the-clock care.”
The news was devastating, and although the family knew Ella’s life would not be a long one, they were determined to make it the best life they could.
“The first few months were a very steep learning curve. We had to learn and understand medical procedures, juggle multiple appointments a day, deal with seizures every day, manage medication levels and try and come to terms with what was going on whilst still trying to give Ella a happy life.
We called ourselves the three bears...mummy bear, daddy bear and baby bear. But as Ella got older she became known to everyone as Ella Bear.Kirsty, Ella's Mum
Kirsty was introduced to Acorns Children’s Hospice, a charity which provides specialist palliative care and support across the West Midlands.
“Acorns was amazing, helping us 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. She loved swimming and going to playgroup and I got to socialise with parents in a similar situation.”
As Ella became older, her condition became more complex. She was fed via tube in her nose and eventually had surgery to insert a tube directly into her stomach. Ella struggled with seizures daily, at times having one an hour. She suffered from more chest infections each year, each one leaving her lungs more scarred.
In January 2015, two years to the day that she was diagnosed, Ella was admitted to hospital with a severe chest infection and pneumonia in both lungs. On 18 January, the family were moved to a private room, so they could focus on Ella.
“We spent the whole day cuddling and watching TV while Ella slept on us. Other than being in hospital and Ella being on oxygen, it was a perfect day. Then just after midnight, whilst in her sleep, with both of us at her bedside talking to her, Ella passed away. It was the worst thing to happen but in the best possible way.
“When Ella passed we found out how special Acorns really was. The facilities, support and help we received during that time was unbelievable. They thought of everything and made making arrangements 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.”
Whilst in her sleep, with both of us at her bedside talking to her, Ella passed away. It was the worst thing to happen but in the best possible way.Kirsty, Ella's Mum