East Preston mum raises funds for daughter's epilepsy alarm
A desperate mother has set up an online fundraising page to buy an epilepsy alarm for her nine-year-old daughter.
Jade Greenough, 29, of Cotswold Way in East Preston, started the pledge for her daughter Samantha, whose cerebral palsy developed into epilepsy when she was 18 months old.
Cerebral palsy is the name for a group of lifelong conditions that affect movement and co-ordination, caused by a problem with the brain that occurs before, during or soon after birth.
Samantha has limited function on her left-hand side, said Jade, as well as balance issues, short attention span and lack of energy.
Around a month ago, Jade said Samantha’s condition worsened and she began to experience night seizures for the first time – the most violent of which took her to A&E for a cut to her head.
She has been on the waiting list for major brain surgery for 18 months, but Jade said they need to do something now.
“Samantha will average about two seizures a day but that can go as high as 12,” she said.
“She’s covered head to toe in bruises and had to have her head glued back together the other day. Even if the alarm can give a ten-second warning to give us the time to do something and make her safe it would make a huge difference.”
The alarm is new technology and is only just available on the NHS, with high demand making access difficult.
It works by detecting an increase in heart rate, indication of an impending seizure, sparing precious seconds where cushions can be laid down or Samantha can be placed in a safe position.
Jade’s husband Adam has been working overtime as a carpenter to help fund the alarm, but Jade is unable to work more than part-time hours due to the amount of care required by Samantha.
“She is very keen on sport and the epilepsy is holding her back,” she said. “She was part of the football academy at East Preston but because there is no warning before her seizures she can just go down in the middle of the football pitch.”
The fundraising target is set at £1,400 and has already reached £295 from 17 donations. Visit www.gofundme.com/epilepsy-alarm