Five year-old Paige lives with Dravet Syndrome, a condition that means she will regularly experience life-threatening seizures that require swift medical intervention. 

The syndrome also means Paige experiences behavioural and developmental delays, speech issues, sensory disorder, sleep difficulties, balance issues and increased risk of sudden unexpected death in epilepsy (SUDEP). The syndrome is very rare and potentially catastrophic. Paige's quality of life is much diminished by feeding tubes and ataxia, which impacts her voluntary muscle coordination and eye movements.

It takes a community

Paige's family and teachers must be alert to Paige's condition at all times as seizures can strike without warning and, when they do, they require urgent medical care to ensure her airways remain open. 

In early December 2018, when many school children are counting the days of advent to the forthcoming school holidays, young Paige had another seizure that brought back harrowing memories for her mother, Sam, who first experienced the horror of her daughter's condition five years ago at the same time of year. Here is her account:

"Yesterday brought back so many flashbacks and terrifying memories. Paige had a seizure at school, which quite quickly turned bad when she stopped breathing and needed help with her airway. Two incredible teachers kept her airway open and ventilated her with a bag and mask and oxygen until the Air Ambulance could land and take over.

I never know which way these seizures will go and how much damage the lack of oxygen will do to her brain. I worry that every seizure could be the one that takes her life. Luckily the seizure stopped and I convinced the crews to let me take her home.