This heartbreaking video shows a baby screaming in pain while suffering a rare form of epileptic fit – but she is now cured thanks a pioneering medical trial.
Little Grace Hall started suffering sudden seizures when she was just a few months old.
Her parents captured the fits in a series of disturbing videos – showing the sleepy tot suddenly jerking and then bursting into tears.
Baffled doctors eventually diagnosed her with a rare disease called West Syndrome and gave her a ten per cent chance of living a normal life.
But after taking part in a successful medical trial she was cured – and is now a happy, healthy eight-year-old.
Her case was recently featured in a medical journal and her parents released a video of her seizures in bid to raise awareness, which has gone viral with two million views.
Mum Emily, 46, of Exeter, Devon, told how she first noticed something was wrong when Grace was six months old.
“I noticed a subtle thing,” she said. “I just saw her arms twitch. Having had two babies I realised it was unusual but if it had been my first I wouldn’t have known.
“I had seen fits before but these were strange in clusters and rolling into a ball especially when she was held.
“The fits were minor, maybe a couple of times a day, but they increased every day.”
Grace was misdiagnosed by two doctors – one said she was just “startled” and another prescribed her Gaviscon.
But after videoing and tracking the fits, her father Kilian, 42 – who served in the Royal Navy – emailed his friend who works in medicine who advised them to go straight to A&E.
Grace was then diagnosed with the rare illness which affects one in 3,000 babies – 90 per cent of which can go on to suffer mental and/or physical retardation.
Emily said: “Lots of our friends wouldn’t contact us after she was diagnosed. They didn’t speak to us because they read how awful it was.
“It was just awful.”
Grace was then entered into a medical trial where she was given two drugs that had been trialled separately but never together.
The immediate affects of the medication were devastating.
Emily, who runs a photography business with her husband, said: “When we gave her the drugs she couldn’t move. She just grunted when she wanted food.
“She was like a sack of spuds – dead weight. If you put your finger in her eye she wouldn’t blink.
“You just go into survival mode and take each day as it comes.”
But within a few months Grace was well enough to come off the drugs – and hasn’t suffered another fit in seven years.
“It’s just a miracle”
The trial Grace took part in was used in a study which was published in the Lancet in November.
This prompted the family to revisit the videos of Grace as a baby and release them to help other parents spot the signs of West Syndrome.
Emily said: “I just want to spread the word and raise awareness.
“I hadn’t looked at the film since she was unwell, it’s still hard to watch but the overwhelming response has amazed us all by hitting over 2 million.”
Grace, who watched the video for the first time last month, burst into tears when she saw it.
Emily added: “You must never forget you can help others even in sad circumstances and epilepsy can be cruel and can slowly take the child you knew away from you.”
