Watch Ella’s journey with r(20) – Comic Workshop, Birmingham 2019:
Mum Kirstie says:
Who knows what the future holds for Ella, all I know is that she is one special little lady.
Start of the journey
Three night time seizures and being bitten on my face is a far cry from Ella’s former self!
January 2013 marks the start of Ella’s traumatic journey, stay at Alder Hey Children’s Hospital and Ella’s subsequent r(20) diagnosis stay and we would like to share Ella’s story of fight and determination with you…
After numerous visits to the hospital and months of assessments Ella was eventually diagnosed with epilepsy.
A year on, Ella was back to her old self; seizures under control and enjoying life as a 6-year-old should do.
Fast forward 5 years and a holiday to Portugal; out of nowhere, she was back to square one, having 40–50 seizures a day. An admission to Warrington General hospital for overnight observation turned into a three month stay at Alder Hey children’s hospital.
Ella missed her first day at high school and regressed to a shell of her former self. Frequent seizures, behaviour and learning issues and wetting herself during the day and night.
Seizures ramped up to 80 a day. Ella was eventually diagnosed with Ring Chromosome 20 Syndrome.
Doctors believe it is unlikely that she will ever get better.
Every day is a struggle; getting dressed; having medicine; just doing the things that we all take for granted. R(20) has had a huge impact on all of our lives; Will Ella ever leave home? Will she ever stop having seizures? – these are the questions that we are asking ourselves daily.
Ella is now at home and has started on a new Ketogenic Diet, she hasn’t had a seizure free day since June 2018 and is suffering 10+ seizures daily.
She started at High School in January and despite the support of social services we are finding it very hard to get funding and is currently only attending school 1-2 hours a day.
This is a further struggle; support. Ella looks normal, yet she is frowned upon due to her behaviour – if only those ignorant people new the challenges that she faces on a daily basis!