You probably don't know what Dravet Syndrome is... I didn't until 2010... so I am sharing my friend's MaryAnne's experience of it with her daughter Poppy. Further information of Dravet is below and you can also see some of MaryAnne's artwork inspired by her daughter  here:  www.maryannehunt.co.uk 

"My daughter Poppy was born in April 2010 seemingly in perfect health. Then suddenly when she was seven months old, she had a prolonged seizure lasting 40 minutes and needed medication in hospital. The seizures continued over the next few months, and every time they were prolonged and needed medical intervention to stop them. After months of tests, Poppy was diagnosed with Dravet Syndrome.

I learned how to give her emergency epilepsy medication which went everywhere with us and I gave her a combination of three drugs every morning and night which helped to reduce the frequency of seizures. Over time a number of different types of seizures developed. But the prolonged ones caused the most damage to her brain sometimes resulting in hospitalisation in intensive care. This impacted on her development which started to slow down and she had problems with balance (ataxia) and required a walking frame to help her learn to walk but even then, she was unsteady on her feet and couldn't walk far.

Despite all the complexities of her illness Poppy was a delightful happy little girl who was loved by everyone who met her. She had a great sense of fun and eventhough she couldn't speak many words, we had the most wonderful close relationship. She attended a special needs nursery part time and made friends with staff and other pupils there. Her team of therapists visited us at home regularly and I was not only her mother but also her full-time carer.

She passed away suddenly in her sleep just one month before her fifth birthday from SUDEP (Sudden Unexpected Death in EPilypsy)."

Dravet Syndrome is a complex and devastating condition. Living with a child or adult who has Dravet Syndrome can be a very difficult and potentially isolating experience for families. From a medical perspective, there is an urgent need for more research into the causes and complexities of the condition, in order to identify more effective approaches to diagnosis and treatment.