Video: Corah Stanley’s parents want to raise awareness of mitochondrial disease
The parents of a 17-year-old girl who died from a rare disease say they won’t give up hope of finding a cure so other families do not experience the same tragedy.
Two years ago, Corah Slaney from Kirkby-in-Ashfield died because of mitochondrial disease, a progressive condition that causes physical, developmental and mental disabilities.
Symptoms can include poor growth, seizures and organ failure among others and there is currently no cure for it.
Corah’s father Carl said: “She was our normal, beautiful young girl going to school, going into college and doing a bit of singing which she liked.
“All of a sudden, everything took a turn for the worst.
“She went from a fully functioning young lady to a young girl who couldn’t walk, couldn’t talk, couldn’t sit, couldn’t eat.
“She was with her friends one day when she rung her mum up to say ‘I think I’ve had a seizure’.
“We came to pick her up and when she come back, she had another seizure and then it just seemed to progress from there.”
Her mother Lisa said: “That was only two months after she was diagnosed with diabetes and they couldn’t find a connection at first.
“They couldn’t control seizures at all so they sent her to Birmingham’s Children Hospital and tried to see if she was a candidate for brain surgery to control the seizures.
“It quickly unfolded there was something more sinister and that was when they first mentioned the mitochondrial disease to us.”
Her parents are now hoping to raise funds and awareness so that mitochondrial disease is better understood.
They are holding a festival at Kirkby’s Festival Hall on September 16.
Lisa said: “Hopefully the festival will sell out and we can enjoy the acts and it will hopefully raise more awareness again.
“We could like to get it further afield so that one day everyone hears about mitochondrial disease and one day supports it just as much as the other big charities do for other illnesses in children.”
