A HUGE thank you for Ella’s absolutely beautiful quilt that arrived today , she is over the moon , it really is stunning , in her words it’s ‘epic’ thank you from the bottom of our hearts what you all do is truly amazing and her smiles this morning we’re just lovely . Ella is due in hospital again soon and her quilt will definitely be coming with us ?? thank you again
Ella was born in 2005 our first born . It was around the time she started to walk we noticed her falling over a lot but just thought she was clumsy . At the age of 3 she had her first seizure on the motorway of all places! She was taken to the nearest hospital and epilepsy was discussed. Over the next few years Ella was in and out of hospital with hundreds of seizures daily, she broke many bones, hit her head a lot when having drop attacks and we noticed that she was beginning to lose skills.
Ella was finally diagnosed with a rare uncontrollable form of epilepsy that also causes development regression, Lennox Gastaut Syndrome. She has had brain surgery, vns surgery and countless medications and trials of new medicines and diets over the years, many that sadly haven’t worked or helped.
Ella still has seizures daily mainly in her sleep meaning she is high risk of SUDEP so every night is a worry . She also struggles to walk due to the osteoporosis that has now developed due to high doses of medication and the many years of drop attacks. Ella is the funniest , happiest, smiliest and cheekiest girl , she loves Disney and singing Disney songs with her sisters. She lives life to the full and makes every day for us brighter, she is definitely our inspiration.