A mum has told how her four-year-old daughter was rushed to hospital during a family holiday at Center Parcs and now is on the waiting list for brain surgery.
Emily, 4, has epilepsy and had her first seizure aged ten months and was put on life support in hospital with her eyes glazed over.
Mum-of-two Jess Page, 27, from St Helens, said she had come home from work when she noticed that her daughter Emily “wasn’t really herself” while sitting in her walker. She then deteriorated with her head dropping, she began dribbling and her eyes started glazing over.
Jess and her partner Ian Andrew took Emily to Whiston Hospital, where she was rushed into a resuscitation area.
The family were told Emily’s symptoms were in fact a seizure and she was later transferred to Alder Hey Children’s Hospital where she was intubated and put on life support.
Emily, now aged four, was diagnosed with epilepsy and has continued to have multiple seizures throughout her life. More recently, she was having three seizures a day over a five day period.
Jess, who works as a shift manager at McDonalds, said that due to Emily’s condition, she mainly spends time with her mum, dad Ian, grandmother Jan and brother Ellis, aged two, as well as attending nursery.
Jess told the ECHO: “She had her first seizure when she was 10 months old. I had come home from work and was having tea and she was sat in her walker. I noticed she wasn’t really herself, she was just staring.
“Her head was slightly dropped and she was dribbling and lip smacking like she was chewing, but not chewing anything. Her eyes were glazed over, it was like she was not all there.
“We knew she wasn’t right but we didn’t know what was up with her. We drove to Whiston Hospital and she was rushed into the resuscitation area.
“There were doctors everywhere and that’s when we knew she was having a seizure.”
Jess said the first time Emily was transferred to Alder Hey, she was intubated and put on life support because her seizure was so severe.
Since her epilepsy diagnosis, Emily has had multiple tests, been on different medications and had to be intubated a further two times.
Jess said: “Nobody in my family or her dad’s family has got epilepsy, so we didn’t know much about it. All we thought of a seizure was ‘drops to the floor and shaking’, that’s what we thought epilepsy to be.
“It was just really scary because the first time I didn’t have a clue what was going on because her epilepsy was really new to us. But even the other two times it was really scary, the last one she was in Newcastle Hospital.
“We went to Center Parcs with my family and she started having seizures that week and then she had a big seizure whilst she was in hospital. She was intubated again.
“Because everyone is rushing around making sure she’s okay, nobody actually turns round and tells you what’s going on. We were in separate rooms and I know it sounds bad but we didn’t even know she was alive. It’s just waiting for her to come back around and getting her back to normal.”
Emily now has an epilepsy watch to monitor her heart rate at night so if she has a seizure, the family are alerted by an alarm.
Jess said: “It was quite stressful, trying to manage normal life and the seizures. We don’t really trust many people with her. I trust my mum with her and nursery. We only really have my mum to look after her if we want to go out and do something.
“The worst bit of it is she missed out on doing quite a lot of things. There’s dangers if she has a seizure when on a climbing frame or other stuff.
“We do let her go to the park and stuff but she hasn’t got as much freedom as other children. Or playing at a friends house, she wouldn’t be able to do that unless we went with her and sat downstairs.
“A few weeks ago she was having three seizures a day for about five days. Once the seizure gets to five minutes she has to have her rescue medicine and when she has her rescue medicine she has to go to hospital, even if rescue medicine stops it.”
Jess said Emily’s development has been delayed by around two years and that she is now on a waiting list for brain surgery to help control the seizures, all of which will be carried out at Alder Hey Children’s Hospital .
Emily’s grandmother Jan Brindle said: “She’ll have the absent seizures, where it’s just like a day dream and then she’ll have another type where she looks frightened because she can obviously feel something, but because she’s only a baby she cant explain to you how she’s feeling.
“But now she’s four she will come to her mum or me and say ‘seizure’ because she knows she’s having one.
“She’s always smiling and going around wanting to give people hugs. She’s funny, she’s got a great sense of humour.
“She has lots of friends in nursery, nursery absolutely adore her. She’s going to infant school in September and it’s getting to the point where we don’t want her to leave [nursery] because they’ve been so good with her.”
The family and Portico Nursery & Pre-School, where Emily attends, are now raising money to donate to Epilepsy Service at Alder Hey to show their appreciation, to raise awareness, and also help other children going through the same as Emily.
Staff at Jess’ branch of McDonald’s are also selling raffle tickets, alongside fundraising they already do for Ronald McDonald House Charities.
Jess said: “The fundraising is a way of saying thank you to Alder Hey for everything they’ve done, not only for Emily but for other children as well.
“It’s also raising awareness for epilepsy because before that we didn’t know anything about it. It might just help other people understand a bit more about it.
“If it can help other families and know it’s not just them going through it it will be more reassuring for them because it can be really scary.”