Ella’s story

A mum sits with her baby daughter

In 2012, on the 10th October I gave birth to my first child, a beautiful baby girl called Ella. It was love at first sight and I couldn’t have been happier, our little family had grown by one perfect bundle of joy.

But unfortunately at just 3 months old it was apparent things were not right, Ella had her first seizure and we began a whirlwind journey. Those first few months all merged into one and Ella was diagnosed with a severe form of Miller-Dieker syndrome and we were told it was a 1 in 17 million anomaly, we had won the lottery no-one wants to win. Ella suffered multiple seizures a day, was unable to eat, sit, talk or even hold her head.

Things were not looking so good for Ella and it was suggested we visit Acorns in Worcester for palliative care. I had never even heard of Acorns or the work they did but we were blown away by the amazing facilities. It was like a shining light in a very dark time in our lives. Thankfully Ella had other plans and we were able to use Acorns for respite, playgroup and swimming which was a firm family favourite! We loved visiting Acorns, the staff were amazing, they became life long friends and Ella was truly happy whenever we were there.

Sadly aged just 2 and 3 months, Ella passed away. My entire world felt like it had ended and this is when I truly understood just how special Acorns really was. I will never be able to explain how much they kept me going and how important their hospices and staff are. We were able to take Ella straight up to Acorns where she stayed until her funeral. I had no idea what to do but they supported me and my family and helped us make arrangements, allowing us to stay in the flat there and making us feel at ease. Even now we continue to visit the memorial garden and to me walking through the front door feels like being back home.

Kirsty, Ella’s mum

Watch the video below to learn more about Ella’s legacy. If you’re interested in finding out how you can set up a legacy, visit our Gifts in Wills page.