Ella’s family first came to Bluebell Wood in 2018, after she was diagnosed with West Syndrome, a severe type of epilepsy. Her mum and dad, Katie and Mat, share their story:

When Katie and Mat went for their 20 week scan, they were told their daughter, Ella, had a heart defect called tetralogy of fallot, which meant she had hole in her heart and that the muscles and arteries in her heart didn’t look like they were supposed to. Katie said: “The doctors explained she would need open heart surgery after she was born, and that it could be linked to a genetic condition. It was a really hard thing to hear.”

Mat said: “Ella is our first child, so when Katie was pregnant we started making all sorts of plans, but after her diagnosis all those choices were taken out of our hands. Katie had to have regular scans; we just didn’t know what was going to happen.” 

Katie added: “After Ella was born, we stayed in hospital for five nights before taking her home. She seemed okay at first but after a few weeks we noticed she’d started making small jerky movements, and wasn’t meeting milestones.

"We were in and out of Doncaster Royal Infirmary at the time preparing for her heart surgery, and I remember showing a video of Ella to the cardiologist, who referred us to neurology straight away.”

Mat explained: “She was diagnosed with West Syndrome – a type of epilepsy – which the neurologist described as a ‘storm’ in her brain. Her brain is constantly firing with activity, so she isn’t able to process anything else. It’s had a massive effect on her development.”

Over the next few difficult months, Ella’s heart condition also deteriorated, and the doctors decided to operate when she was three months old.

“Initially, we were both so worried about her surgery, but in the end it’s the epilepsy that’s affected her most. It’s just constant. I remember one time I was looking after Ella on my own, and she just lay there having seizures all day. It really affected me, since it was the first day I’d spent on my own with my daughter.”

Since then, Katie and Mat have tried lots of different medications and diets to get Ella’s epilepsy under control. They also recently discovered she has a genetic condition which has affected her too. Despite this, they always try to see the positives and remind themselves about what Ella can do.

“When I think back, the kind of character Ella has now really is amazing. She does things we never thought she’d do, like roll over. For someone with a child who is okay, it would be such a tiny thing but for us it’s massive.

"Other parents sometimes take things for granted – we’d love to be able to complain about normal mum and dad things – like Ella drawing on the walls – but this is our normal.”

Katie and Mat started to consider coming to Bluebell Wood after talking to a parent from the hospice. Mat said: “We didn’t realise Bluebell Wood did all the things she told us about – she really sung their praises. We decided to self-refer and after one of the nurses came to visit us at home we couldn’t wait to go.

“Everybody we’ve met here has been so friendly and caring."

"If Ella’s having seizures all the time it can wear us both down, but having the opportunity for someone in the care team to look after her for a few hours makes a big difference, and means we can spend quality time together. The care team has also given us lots of advice and support about entering Ella into school, which has been a big help too.

“It can still be hard to see what other children Ella’s age are doing, but when we come here we can talk to other families who are going through similar things, which really helps.

"Everything is catered to children like Ella – she gets to go to activity days, enjoy some baking, and has even started hydrotherapy. It’s nice that she can do those things and we can all come as a family. It’s nothing like what we imagined a children’s hospice to be.”

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