Story
January 2013 marks the start of Ella’s traumatic journey and subsequent stay at Alder Hey Children’s Hospital 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, bang, 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.
Seizures ramped up to 80 a day. Ella was eventually diagnosed with Ring Chromosome 20 - a very rare condition. The most common symptom is an aggressive form of Epilepsy which is difficult to control and drug resistant. Doctors believe it is unlikely that she will ever get better.
Thankfully, Ella is now at home and has started on a new Ketogenic Diet to assist with her epilepsy control along with numerous anti-epileptic drugs. She is still unable to start school and is suffering 10+ seizures a day but is battling though, taking every day as it comes.
With a three month stay at Alder Hey Children’s hospital we witnessed first hand the incredible work carried out, and the care provided by the staff.
Whether a consultant or nurse, they work around the clock to ensure you and your child are cared for. Ella enjoyed many activities such as musical time; magicians and pumpkin drawing during her time there and I know these things brightened up bad days and kept her stimulated during her stay.
While in hospital we had a lot of time to reflect and it became obvious that we wanted to give something back, both as a thank you and to ensure they maintain the same facilities for other children through regular funding. They treat in the region of 275,000 children each year!
To achieve this, Ella’s dad, Carl, and his good friend Mike are embarking on a tough challenge to conquer the Inca Trail in Peru with over 60km of hiking in rough mountainous terrain at altitudes of 4200m.
In addition, Carl will be running along with employees of Oliver James Associates in the Manchester 10k on the 19th May.
All money raised goes directly to the Alder Hey charity which funds services not provided by the NHS, such as specialist equipment; entertainers, and the like to ensure children are as occupied and are as happy as possible, which in turn helps speed up recovery.
Please kindly donate as you see fit. This really is an amazing cause and so important for those children who find themselves in hospital for long periods of time.