Sofia had seemed fine just minutes before she was found unresponsive in her bedroom
A dad has described the moment he walked into a room to find his 13-year-old daughter collapsed on the floor. Sofia Chambers had appeared fine only minutes before but was now unconscious and unable to explain what was wrong when dad Pete found her.
The 48-year-old moved her into the recovery position and phoned for an ambulance, but would be 35 minutes before she came round. Pete said: “The morning was going as normal, and then I just found Sofia lying on her bedroom floor at 7.45am. It looked like she was fast asleep. I checked and she had a pulse but she was just lying there and was totally unresponsive.
“I called the ambulance, and the paramedics were on the line and told us to keep checking her vitals, which we did, and then she was taken to hospital.”
The experience in January this year was made more distressing by the fact that they had no idea what had caused it. Doctors thought Sofia had simply fainted and were unconcerned. But two weeks later she had a fit at home in North Down, Northern Ireland.
“She collapsed just outside her brother’s bedroom and my wife saw it happen,” Pete says. “Her mouth contorted slightly to the side, and then she fell onto the bed, went limp, and then started to go into a full body seizure.”
In the weeks that followed, Sofia experienced more frequent and prolonged episodes, often accompanied by violent seizures. Doctors asked the family to record videos of the fits and on March 28 she was formally diagnosed with focal epilepsy. They prescribed medication to stop the seizures which has been successful.
“The whole thing was just such a shock,” Pete says. “It’s not something that you expect and there’s no history in our family so it can happen to anybody at any time.”
“Sofia’s now been six and a half months seizure-free and the only major side effect really seems to be fatigue, though she does play a high level of sport. She’s in a pretty good place at the moment, the fatigue has improved and she takes her medication twice a day.”
The family hopes that Sofia has childhood epilepsy where the majority of sufferers grow out of seizures by the time they are adults. There is the hope that if she goes for two years without a seizure then she may come off the medication,” Pete says. “Hopefully she won’t have this forever.”
There are over 630,000 people in the UK with epilepsy, and rsearch from Epilepsy Action revealed that 54% of British adults say they wouldn’t know what to do if they witnessed an epileptic seizure in public.
Pete, a school principal, wants to raise awareness of how common epilepsy is and how to help if you see someone having an epileptic fit. “Epilepsy is like anything else: you don’t think about it until it arrives on your doorstep,” he said. “Now we are going through this with Sofia, we realise there are so many more people who have had similar episodes and that it’s much more common than people probably imagine.
“I’d love to make people aware that if you do suffer from epilepsy, there is very good medication out there that can help you and there’s lots of support. People should also try to learn first aid and know that if you do see somebody having a seizure, make sure their head is in a safe position but let them have their fit and don’t intervene because they will come out of it.”
Despite the challenges of her diagnosis, Sofia has not let epilepsy stand in the way of her passion for sport. S he was recently selected to represent Ulster at U13 level in hockey and is on the U16 Ulster development squad, which is an age group above her.
Her family want her story to be a positive and encouraging message for others who may have been diagnosed with epilepsy and who are worried about the future. ” Sofia is a shining example of somebody who loves playing competitive sport but has been hit with a massive kind of barrier in front of her, but that hasn’t knocked her back whatsoever,” Pete said.
“There are actually plenty of people in the professional world of sport who suffer from epilepsy that you would never have known about. I think that’s an important message that no matter what barriers are put in front of you, with the right support, there’s no reason at all why it should hinder you.”
Find out more about epilepsy at https://www.epilepsy.org.uk/