Hi, my name is Scarlett and I am 9 years old, nearly 10. I wanted to tell you about a very special family. This family means the world to me, my aunty Amanda and Uncle Jules with their beautiful girls called Caitlin and Elaina are just amazing. They have had such a heart-breaking time, but they fight and keep going, let me tell you their story a story about their youngest daughter called Elaina.

Elaina was a bright, happy and healthy baby and then at four months old she had three seizures lasting 5, 12 and 20 minutes. No reason could be found and therefore she was diagnosed as epileptic. Elaina started medication and stayed seizure free for six months but then things got worse. At ten months old she had a 45-minute seizure and ended up in intensive care for two days with a machine breathing for her.

Medication was increased but Elaina continued to have seizures and they become longer and longer, lasting 30 mins to 2 hours on a regular basis. No one could tell us why this was happening to beautiful Elaina. Elaina was developing normally but having huge seizures. Test were done, and more and more medications were tried but nothing stopped the seizures. On 12th Aug 2016, Elaina had her 30th seizure, just three days after her second birthday. This seizure changed her forever because, for a yet unknown reason, Elaina had a cardiac arrest and was ‘gone’ for eight minutes.

Elaina went from a two year old doing everything a two year old should do, to a little girl who ‘wasn’t responding’ how Doctors wanted her to. A scan revealed severe brain damage.

No one could tell us what would happen next. We were told she may not live, she may need help to breath and we don’t know what she will be able to do. At that time Elaina could do nothing. She couldn’t use her vision, move her limbs, hold her head up or sit. She couldn’t stand, walk or talk. Elaina was fed down a tube up her nose. Her seizures went from 1 a month to 25 a day.

After this event Elaina was diagnosed with Dravet Syndrome, a catastrophic form of epilepsy.

Brain damage and Dravet syndrome, the outcome didn’t look good, BUT she didn’t give up.

Sixteen months on Elaina is still fighting. Elaina still can’t talk, but communicates with vocalisations. She understands but can’t say what she wants to. She gets frustrated and sad. Elaina’s vision has been affected but no one can tell us how much. Elaina can’t sit, crawl, stand or walk although she is making progress, she can weight-bear with help. She is working hard with physios to learn to hold her head up and she is making progress with this, but its hard work and she needs constant input and practise. Elaina has defied odds and has learnt to eat, it may be puréed food, but she eats!!

Elaina is a miracle and is fighting to get better!!

I want to raise money to help Elaina, to buy special equipment which will help support Elaina. I am going to climb the highest mountain in England Scafell Pike. This will be in August alongside my family. This will be my biggest challenge and I know it will be hard, but I want to do something to help, I cannot change what has happened, but I can support (with your help) a little girl who is fighting. Let’s make that fight a little easier. Thank you for taking the time to read this, Love Scarlett Lee aged 9 ….. but nearly 10.