Evie was born 4 days late but arrived safely. She was a happy contented baby. At 12 weeks old I was cuddling her and suddenly her left arm began to twitch and it was so scary. We didn’t know why, or what it was! We took her to the doctor and they said it was maybe because she had a temperature and told us to come back if any more concerns. One week later the same thing happened again in her cot at night! It was so scary and frightened us. At 5 months old I was swimming with Evie and her sister and suddenly Evie began to have a seizure, it was horrendous, lasted for 1 hour and we were rushed into hospital. On route she had a respiratory arrest, stopped breathing and we were admitted into the ward for days of tests with no results! We spent days in hospital and hours and hours in a a&e following seizures lasting an hour at a time. Blood tests, scans, investigations showed nothing, until just before her 1st birthday she had an eeg and blood was sent to a specialist in Scotland for tests and she was diagnosed with Dravet syndrome. We felt like our world had ended!
Evie is so brave, she is a miracle to still be here . Everyday she has seizures, she has had numerous operations at Great Ormond Street associated with having Dravet syndrome. She is fed via her gastrostomy and has all her medicines via this. She goes to a school for children with severe learning and physical difficulties. She is a child who loves animals and creative learning. Life can be so cruel and Evie is unaware of this, which makes her simple outlook on life something we could all learn from .