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.

It was five years ago on Sunday that our lives changed forever and I remember every detail: who was there and what I was doing, the smells, the voices, the beeping of machines... I remember feeling like I was being suffocated. The room was spinning and I felt my whole world being ripped apart in front of my eyes.

I watched helplessly as a huge team of doctors and nurses battled for hours to save my little Paige; performing CPR and putting tubes down her throat to keep her airway open, drilling into her bone marrow to inject live-saving drugs as her veins were collapsing, and then being pulled into a side room to be told she was critical and that the doctors were doing the best they could to save her.

Those words, that night and those events play over and over in my head. I will never get over the trauma or the thought of not taking my baby home for Christmas that year.

I treasure every day I spend with this warrior. I look back at what we have been through over these five years and how we manage to deal with these episodes every few weeks. Although the future is uncertain and we don't know how long we have left with her, I am so proud to be her mum and I will continue to fight for her with every ounce of strength in my body."

Sadly children constituted 11% of our patients in 2018. But it's thanks to the support of our donors, fundraisers, customers, and those who remember us in their wills that makes our service possible. 

Paige at Little Bridge House, Childrens Hospice in November. Her mothe, Sam said: "Paige had a fantastic weekend making slime, Christmas cards, singing, dancing, splashing in the Jacuzzi, meeting Father Christmas and pretending to be Queen Elsa!. It makes me so happy to post such a positive photo."