Monday 15 October 2012
HEALTHY LIVING: Implant saved my epileptic daughter’s life
AMY Brownhill’s struggle with epilepsy began when she was just over a year old.
But the condition didn’t emerge in the form of a dramatic fit or shocking collapse - instead Amy’s mum Emma noticed her daughter beginning to twitch and jerk as she watched television at their home in Hackenthorpe.
Within months her parents’ fears were confirmed when she was diagnosed, a devastating blow for Emma, aged 36, and her husband Damian, 37.
As her fits worsened, Amy was prescribed medication, but this caused unpleasant side effects - so after receiving help from the Sheffield charity Fable, she underwent a pioneering procedure called vagus nerve stimulation therapy, which aims to reduce the severity of sufferers’ convulsions.
The schoolgirl has now reached the fifth anniversary since her first operation, and Emma believes her daughter may not have lived to her 12th birthday without the treatment.
“If she hadn’t have had it, the worst could have happened, because of the amount of seizures she was having,” she said.
For more than 15 years, Fable - For A Better Life with Epilepsy - has been raising millions through its charity shops in Sheffield, funding nerve stimulation implants and educating the public about epilepsy.
It was set up by city mum Sandra Howard, whose 16-year-old son Gareth became the second, and at the time youngest, person to have an implant fitted successfully.
Although the implants are now more freely available on the NHS, Fable continues to act as an information resource, raising money and holding a monthly epilepsy support group.
“Their advice and support has been above and beyond sometimes,” said Emma.
“I would recommend the implant for anybody with epilepsy. It’s worked for Amy.”
Sandra said she has noticed huge changes in Amy over the past five years.
“She’s just so different now to what she used to be, she was quite withdrawn in the past but now she’s a lot more alert.
“Since the seizures were brought under control it’s made a big difference to her life. It’s been great for us to see her development over the years.”
Amy started having bigger fits - known as tonic-clonic seizures - around five years after diagnosis.
Emma said she contacted Fable after hearing about the success of the VNS implant.
“Amy had been on numerous medications, too many to even think about, and she was always having adverse reactions, like hair loss or mood swings.
“We had to go through approval from the NHS and luckily they didn’t refuse.”
The VNS implant is fitted on the upper left of Amy’s chest wall, just below her shoulder, and is around the size of a watch.
It sends regular electrical impulses to the vagus nerve, which runs from the brain through to the abdomen.
It means that instead of suffering fits, Emma simply sits motionless and stares into space until they pass.
“She’s doing fantastically, she’s had the battery replaced twice now,” Emma said.
“It actually does stop the majority of the seizures before they start.”
Amy, who also has autistic spectrum disorder, has just started in Year 7 at the Talbot Specialist School in Norton.
Emma, who works as a carer for the elderly, and Damian, a senior account manager at an engineering firm, have another daughter, Jessica, 15, who is not affected by epilepsy.
“It’s going to be more difficult as Amy gets older, because she’s going to go through puberty,” Emma added.
“She does get really difficult to control, she has what we call ‘meltdowns’. I do wrap her in cotton wool, but I try not to do anything differently.”
Visit www.fable.org.uk or telephone 0800521629 for more information about Fable.