A FUNDRAISING day aims to buy equipment that could save the life of a young girl with a rare form of epilepsy.
Sophie Atkinson suffered her first fit when she was just four months old, and at 18-months she was diagnosed with Dravet syndrome, which has a higher fatality rate than any other form of epilepsy.
Her condition is very drug-resistant and it has a higher sudden death rate than any other form of epilepsy.Lisa Jenkins
Now her mum, Lisa Jenkins, originally from Horsley Hill, South Shields, is taking part in a fundraising fitness day to buy life-saving equipment.
The event, organised by Clair Steinberg and Stacie Marshall of S&C Fitness, aims to raise enough cash to buy an alarm that will let Lisa know when Sophie, now nine, is having a fit.
Lisa, who is Sophie’s full-time carer, said: “Her seizures can last anything from a couple of minutes up to two hours, and if they’re that long, she needs to be sedated because drugs won’t help.
“The condition is very life-changing. Sophie has learning difficulties and has to go to a special school, she has speech problems and can’t walk very far so needs to use a wheelchair.
“She also has different kinds of seizures and we have an alarm at the minute, but need this new one because her seizures are changing.
“She’s just done a trial for a cannabis-based drug so hopefully she’ll get that soon.”
Lisa added: “When people hear epilepsy they think you take your medication and that’s it, but it doesn’t work like that for Sophie.
“Her condition is very drug-resistant and it has a higher sudden death rate than any other form of epilepsy.
“The alarm costs about £800 and it works by detecting Sophie’s heartbeat and sounding when she has a fit.
“At the minute, I check on her constantly through the night so this alarm would mean I’d be able to relax a little more and maybe even get some sleep – and it could save her life.
“It’s portable too so it would mean she’d have a little more freedom and be able to sleep over at her dad, Darren Atkinson’s house a bit more.”
Lisa is also taking part in the event, which will see people sponsored to take on back-to-back metafit training sessions.
Lisa, who now lives in Redcar, Cleveland, added: “I’m just overwhelmed that this event has been set up to help Sophie. It’s just amazing.
“It will make such a huge difference to our lives and I’m so grateful.
“I haven’t told Sophie about it yet because she can sometimes have a fit when she gets over-excited, but I know she’s going to love it. She’ll have a great time.”
The fundraising event takes place tomorrow at Sutton Hall in Prince Edward Road, South Shields, from 10am to 4pm.
A raffle will be drawn by Sophie at 12.30pm.