A childhood stroke left Jess Redfearn with a multitude of medical complications, but it is the effect it has had on everyday life that has inspired her family and friends to raise awareness and support for others.
Dressed as a cat at a birthday party four years ago, Jess Redfearn was a normal nine-year-old happily jumping on a trampoline. Shortly after, she complained to her Mum Tarnia about a headache. Thinking nothing of it, the family had no idea the next few moments would change their lives. “Her face had just dropped.” Tarnia recalls, “I had to grab her as she collapsed to the floor. We weren’t sure what was happening but I kept thinking that it couldn’t be a stroke because she’s too young.
“It was kind of touch and go at the hospital. She had so many tests and scans but there was a lot of confusion. Even the doctors couldn’t believe she had had a stroke. They told us that it could just have been a Migraine, I couldn’t believe it! It was very scary. Jess couldn’t talk so we thought we’d try singing. We sang ‘I know a song that will get on your nerves’ and it was when she touched a finger on my nose and told me to shut up that I cried with relief. Thank goodness she was ok.”
Eventually the doctors conceded that it had been a stroke of the left middle cerebral territory but she still had to have scores of different tests to determine the cause. After weeks of physiotherapy and re-learning to walk and talk, she had been put on Aspirin and despite the slight limp, was allowed home. The family were sent away with a print off from Great Ormond Street’s website about adult strokes and virtually no information about what could happen next. Tarnia says: “Naively, we thought that would be the end of it.”
A few weeks later the family went to the doctors after Jess had complained about another headache. Within a few days she was back in hospital. The doctors were unsure about how her brain would reroute the blood supply. Tarnia and Dad, Tim were told by doctors that there was nothing more they could do. Tim said: “I really thought we were going to lose her.”
Jess was put on Heparin and Warfarin, which are two types on blood thinners. Thankfully, she started to improve and around four weeks later, the family were able to go home again. She still had problems with the right side of her body and had been left with symptoms much like Hemiplegia (a neurological condition that weakens one side of the body) and Dystonia (a range of movement disorders that causes involuntary spasms and contractions).
Tarnia found the website ‘www.childstrokesupport.com’, which was started by Soniya Mundy. Tim said: “It was really good to realise that you were not on your own, we had been given such little information from the doctors and nurses that it was great to meet others with the same problems to compare notes.”
The following weeks at home were really tough; simple things like getting up and getting dressed were exhausting. She could manage 15 minutes at school before she had to come home. Hobbies she had enjoyed before the stroke, like riding a bike or rock ‘n’ roll dancing, were no longer a possibility.
It’s not just hobbies that have been affected. Her family say that her temperament has changed and because her muscles are working twice as hard as other peoples, she is constantly exhausted and gets extremely irritable.
“I just want to do normal stuff like other kids, but I can’t ride a bike, I can’t even skip.” Jess says.
Footwear is a nightmare as well, she wears away the shoes so quickly and because they need to be supportive, she can’t wear her fashionable or girly favourites.
A year 9 student at the North School in Ashford, Kent, school life is extremely difficult. Jess says she gets frustrated having to explain her disability to everyone. “People just don’t seem to understand that I have brain damage.” She says. “I used to find talking about it difficult but now it’s just normal. I made a scrapbook about it for my teachers so they could understand what I go through everyday. They keep it in the staff room. I really think it has helped.”
Living with a young disabled person affects the whole family. Younger sister Stephanie (10) says: “I have to do more stuff around the house, I’m the run-around or the spokesperson”
Jess says: “The hardest thing has been what kids say, really cruel things. I wouldn’t say I get picked on more because of my problems, but people do stare and judge me. That’s why I spend so much time with younger kids, because they don’t see my disability.
“I’m worried about everything in the future. The world is not my oyster and my disabilities will stop me from doing stuff other kids can do. I’d like to write a book one day so people can read my story and understand a little better.”
Jess says that friends and family have been incredibly supportive. Her friend Sam Chamberlain, 18, is swimming the channel in September 2012 to raise awareness for childhood strokes. Sam says: “I want to help raise the awareness and get the word out there that children can have a stroke.”
Anyone can see that they have a strong family unit and a lot of support. But what does the future hold? With cuts to disability benefits and research, the future is unclear. Having a stroke at any age creates complications for the rest of your life, so when the stroke happens at the beginning of your life, when your muscles are still growing, the everyday battles are challenging and right now, the Redfearns are battling for support and awareness.
Websites like www.childhoodstrokesupport.com are charities and are run on donations. They provide crucial support and information to families. Look out for childhood stroke fundraisers around the country and you can support Sam’s swim here.