Ella is our beautiful 7 year old daughter who has a rare genetic condition and complex medical needs. Ella was born with tetralogy of fallot which is a congenital heart defect which required open heart surgery at 3 months old. Around the same time Ella was diagnosed with west syndrome which entails uncontrollable epilepsy and severe global developmental delay. This has now developed into Lennox-gastaut syndrome. Along side this Ella also has skeletal abnormalities. Ella is unable to sit unaided so she requires specialist seating, and she is unable to mobilise. She requires constant care for all her needs.