Scarlett has a genetic defect called Dravet Syndrome, a very rare and complex condition medically termed ‘a catastrophic form of epilepsy’ and affects 1, in 40,000 children.
Scarlett goes into status epilepticus, meaning her body is unable to recover, this in turn means Scarlett’s seizures last up to 3 hours!!
Every time Scarlett has a seizure she is rushed to A&E’s resuscitation unit at QMC, she has had her bones drilled into, to get meds into her system as quickly as possible & has been put into induced coma's many times so her body & brain can survive!
Dravet Syndrome cannot be cured, is drug resistant & Scarlett is still on 3 medicines, 3 times a day. We can't leave the house without her backpack which contains life saving medicine & an oxygen mask.

The children who suffer from Dravet Syndrome endure many other life limiting conditions that form part of Dravet, they include:
Very low life Expectancy
High risk of SUDEP (sudden unexpected death in epilepsy)
Development Delays & Development Regression
Speech Difficulties
Movement & Balance issues
Growth & Nutrition issues
Chronic Upper Respiratory Infections
Sensory Integration Disorders
Sleeping Difficulties
Unable to Regulate Body Temperature