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Genetic disease is killing my family
A MUM-of-three who lost her husband to a rare incurable disease told today of the heartache of learning that four of her children and grandchildren have the same devastating illness.
Elaine Facer, aged 62, is living with the pain of seeing three generations of her family struggle with Neurofibromatosis.
The incurable genetic condition causes cancerous lumps to grow along nerve endings in the skin, brain, and other parts of the body and can also lead to blindness.
Elaine nursed her husband John for 10 years, until his death aged 50, as his body struggled to cope with the devastating impact of the disease.
The pain of John's death 15 years ago is made worse by the heartbreaking knowledge that she has a grown-up son and daughter and two grandchildren who all face their own battles with the incurable illness.
The retired care worker from Longley said: "I can't cope with this disease anymore.
"I cared for my husband when he had 50 cysts on his back, heart trouble and had gone blind from it. Now, two of my children have it."
Children who have one parent with Neurofibromatosis have a 50 per cent chance of developing the condition.
Elaine said: "Cancer is a truly horrible thing, and the sad thing is we are probably not going to cure it all, but you have just got to keep trying.
"It's absolutely awful to see my family affected by it. It's breaking my heart."
To say thank you for the medical care her family has received over the years Elaine has decided to kick her 51-year smoking habit to raise money for Neurocare, a charity which supports the Neurosciences Department at the city's Royal Hallamshire Hospital.
It was not an easy challenge for Elaine, who used to smoke 20 cigarettes a day, and she is proud that she has not lit up since March.
She has raised 250 so far, after receiving sponsorship from family and friends and contributing 1 from her own pocket for every day she has not smoked.
Elaine said: "It wasn't easy to give up after more than 50 years. I still get cravings occasionally, but I don't really miss smoking. I put in my own money because it would have just been spent on fags anyway!
"I'm not going to start smoking again, I'd look a bit silly if I did now!"
Elaine is also supporting the charity by helping out every Friday at a bring-and-buy sale in Firth Park library in aid of Neurocare.
- The Neurofibromatosis Association is optimistic that there will be an effective treatment for the disease within the next five to 10 years. In the meantime, genetic screening and counselling is available for families with NF.
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Saturday 26 May 2012
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