Cordelia Day is described by her mum as a force to be reckoned with. A lover of life who is constantly on the go, who loves swimming and singing and generally getting messy.
But, on a bad day, the 9 year old can’t even get out of bed due to PCDH19 epilepsy, an incredibly rare form of epilepsy that affects only around 400 girls worldwide. Cordelia can have up to 40 seizures a day for a few days at a time, and there is very little parents Sharon and Kevin can do to control them. “We never know when she might have a seizure, they literally happen out of the blue.” says Sharon. “We’ve had seizures as we’re getting in the car before, or when she’s happily bouncing on the trampoline – you just don’t know.”
Day to day the family can’t make plans. Sharon doesn’t even travel very far from Cordelia’s school because she could be phoned at any moment to go in and check on Cordelia. And, outside of school, the family can’t travel far as there are only two hospitals in the country able to give Cordelia the care she needs – the one near home and the one near Chestnut Tree House.
This means that Chestnut Tree House is the only place the family can spend time together away from home. It is also the only place that Sharon and Kevin get a full night’s sleep. “It’s just a chance not to be looking at monitors or listening out for her,” says Sharon. “That first day, when we arrive and we just don’t realise just how tired we are, all we want to do is sleep and eat.”
Whilst at Chestnut Tree House Sharon and Kevin will spend time with Cordelia and also spend time as a couple. “We always do her bedtime routine, we always say goodnight because, with a child like Cordelia, we just don’t know if we’re going to see her tomorrow. But it’s also our only chance to spend some time just the two of us. We can mooch around and do what we fancy; get in the car and just see where we end up, watch movies, or just sleep. That might sound really boring, but we don’t ever stop at home. Cordelia is on the move the whole time, she’s a busy, busy girl. It’s just nice for someone else to be run ragged for a while. And we know that she is having fun and doing stuff she loves.”
As well as short breaks at the hospice, the family has a Chestnut Tree House community care support worker who visits them at home once or twice a month. “She takes Cordelia swimming, and then they go to McDonalds and maybe softplay. It’s become their little ritual and Cordelia loves it, she can’t wait for Clare to come. And it gives me a chance to catch up on housework or actually sit down for 5 minutes.
When asked to sum up Chestnut Tree House Sharon says “it’s safe for feeling the way you want to feel, for doing what you want. And I just love that, whilst I’m being indulgent, I know Cordelia is doing things that she loves.” Kevin describes the feeling as “like driving your car into heaven”.