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Now is time together – Cordelia’s story

Thursday 3 January 2019

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 an incredibly rare form of epilepsy.

IMG_20181201_130055426She had her first seizure at just 4 months old and it took 5 years of seizures, hospital visits and tests for her parents to get a diagnosis. “We were told that Cordelia has PCDH19 epilepsy, a type of epilepsy so rare that there are only around 400 girls in the world that have it,” says Mum Sharon. “It was a double edged sword; we wanted to know what was wrong with her, but on the other hand there’s no cure, it’s life-limiting, it’s fatal, and the seizures can be very bad.”

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 can put her to bed and everything will be fine and she might have a seizure at 2am. 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.”

By the time Cordelia was 7 the family were desperate for help. They were exhausted and in need of some respite from monitoring Cordelia around the clock.

IMG_20181208_112810582They were referred to Chestnut Tree House, who offered them the chance to spend some time at their hospice building near Arundel. “It was overwhelming at first,” says Dad Kevin, “but the people are so nice. It’s just a safe space for us to be.”

Mum Sharon says it was very different to what she had thought. “It’s very warm; like a home, not a hospital setting. There’s a fireplace as soon as you walk in and toys everywhere. Everything feels comfortable, like it’s been built with love.  There’s a beautiful mural in the magic carpet room – it’s things like that that make you feel like it is a really nice place for kids to come.”

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.

IMG_20180615_113239892This 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. And we always try to spend mealtimes together, which are really nice as the pressure is off. We don’t have to do the running around, the cooking and cleaning, we can just enjoy a meal together.

“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.”

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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.

“And that’s the thing with Chestnut Tree House; it’s not just 2 hours every two weeks, it’s coming along to medical meetings with us, it’s ongoing support, and then it’s the respite too. So it feels like a whole package.”

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”.