Brave Sophie battled on for 13 years despite having more than 50 seizures a day
THE father of a brave young girl who died at the age of 13 has told how she battled for years against the odds.
Sophie Byrne was just 10 weeks old when she was diagnosed with a rare medical condition that was causing her to have seizures.
Dad Matt Byrne, 50, who works in recruitment in the village of Church Broughton, explained how they received the diagnosis and began researching the rare condition.
He said: “She was born in 2001 and, very soon after, we noticed something wasn’t quite right. They turned out to be seizures but at the time we didn’t know.
“We took her to the doctors and they thought it might be colic. It took a while to diagnose her, but after going to the doctors a couple of times, they referred us to Royal Derby Hospital and they did some scans.
“After about 10 weeks, they diagnosed her with tuberous sclerosis, which you may not have heard of because not many people have it. It affects various organs in the body and hits the brain, so her brain wasn’t developing properly and never would.
“The brain matter was causing her to have seizures literally all the time. They tried medication which didn’t really work, so they referred her to Great Ormond Street.”
Sophie’s condition was a genetic disease that causes non-cancerous growths to form in the brain and other organs. An operation to remove part of her brain was the only option when she was a year old. It successfully limited the seizures to around 50 each day.
Doctors estimated that she would have around five years to live, and she was enrolled her into a Derby nursery and school to give her the best life possible.
Matt said: “She did okay. She was never able to walk, she had to use a wheelchair and she fed herself once. She couldn’t talk but could communicate in other ways, so you knew if she was okay or if she was in pain. She had loads of medical procedures and started attending Rainbows hospice as well. I didn’t know anything about the condition to begin with, nor did the GP really.
“Obviously, it’s very hard because you expect a healthy child so it’s a bit like a mini-bereavement when that doesn’t work out. You get used to having your expectations to be different.
“It was hard seeing all the other babies born at the same time who were growing up and developing – they would now be 21 years old. But she was never progressing. When she died, she probably was intellectually about a six-month or 12-month-old baby.”
Matt started taking his daughter to Rainbows hospice, which helps care for terminally ill children and those with life-limiting conditions, as well as providing respite care for their families. Matt say he knew she was in safe hands there and was able to be cared for and enjoy life.
In 2015 Sophie died peacefully in the arms of her mother, Jane Rushton, and holding her dad’s hand at Rainbows.
Rainbows has since provided care to Matt’s wife, Nina, and daughters Lydia (11) and Madeline (8), as well as Jane’s husband, Phil, and their children Oliver (10) and Bertie (8).
Now, Matt has written a book, called Why the Sky is Blue, in dedication to his daughter to try to raise funds for the hospice to continue its work.
He said: “A friend of mine, called Sam, who knew Sophie, came up with the idea. Just a silly idea for a children’s story, so I thought I would write it and see whether it could make any money for them. I really enjoyed writing it and to see it produced is wonderful.
“Rainbows was so significant in my life at that time and it still is now. I do go to the hospice occasionally to the remembrance garden and I know Rainbows is always there for us if we need it.”
Jenny Perry, Rainbows community fundraiser, said: “This really is a lovely story and it is wonderful that Matt has written this book in memory of Sophie and for Rainbows.
“Supporters like Matt make all the difference to the services that our charity provides to hundreds of families and we thank him from the bottom of our hearts.”
Why the Sky is Blue is available from Amazon, Waterstones and the Rainbows’ shops.
It was hard seeing all the other babies born at the same time who were growing up and developing.
Matt Byrne