Family aiming to raise £45,000 after NHS says it can't fund Sheffield teenager's epilepsy surgery
For seven years now a teenage girl has been battling a rare and difficult case of epilepsy, but as she finally found hope in a new treatment, the NHS told her they could not fund it.
Her family has now launched an online crowdfunder to raise the £45,000 needed for the treatment.
When she was only eight years old, Grace Pagdin had her first seizure.
It led to seven long years of suffering as her condition continued to deteriorate, with her now living with a rare and complex form of stasis epilepticus.
“It’s been awful,” Grace’s mum, Emma, told The Star.
“We’re in hospital every week if not twice a week. The seizures are so aggressive - they last hours and hours.
“When she’s seizing they’ll be pumping medication into her but it’s just not working.”
The debilitating condition means that Grace, from Ecclesfield, can’t attend school or go out and make friends her age.
Just this week however, the 15-year-old found hope when a neurological team at King’s College Hospital identified her as a candidate for a potentially life-changing deep brain stimulation (DBS) operation - but there was a catch.
“We were speaking to her consultant and he said the good news is that the King’s College neurosurgeon said Grace is a perfect candidate,” Emma added.
“But, the bad news is the NHS trust won’t fund it. So you can imaging the feeling of that was not great.
“That’s what spurred me on. I asked the consultant if he thought it would be a good idea to start a fundraiser and he said ‘definitely’.”
After only one day, Emma’s GoFundMe page has earned more than £6,000 of her £45,000 goal.
There have been more than 100 donations, with one person sending in £1,000.
And to help spread the word further, Emma made a video for social media that has been seen around 10,000 times on Facebook and continues to be shared.
“The video I made straight after seeing the consultant,” she explained.
“My face has been shared so many times - I’m looking at it like ‘God, I could’ve brushed my hair’.
“But I’m glad I’ve done it as just me being raw.”
The concerned mum said she’s ‘in awe’ after so many people have showed their support and hopes that she will be able to help her daughter get this life-changing operation.
In her video, she added: “Grace deserves a normal teenage life like all other teenagers.
“She’s never had a sleepover, she can’t have sleepovers, she can’t go out of the house on her own.
“She detests it and she really is grieving the life of a teenager.
“If we can give her some form of life from having this DBS treatment we will do.”