Devoted mother Vicki O’Farrell has quit smoking – in a desperate bid to outlive her sick children.
No parent should ever be forced to watch their children die before them, said the 50-year-old Aberdeen woman.
But Mrs O’Farrell’s son, Gavin, and daughter, Krystle, were dealt a “death sentence” before they were even born.
They suffer from one of the world’s rarest diseases, Wolfram syndrome, a debilitating and fatal type of diabetes that kills off parts of the brain, causing a range of neurological problems.
And knowing she needed to be there for them, 50-year-old Mrs O’Farrell, from Mastrick, kicked her 30-year habit virtually overnight.
She said: “It was really difficult. I smoked from when I was 14 years old. I used to smoke 15 to 20 a day. But I saw people who were on a defibrillator because they smoked and I just thought, ‘I can’t be like that for the kids’. So I gave up, because I didn’t want to die. And I don’t drink either. I need to stay alive for them.”
The condition, which affects just one in 770,00 people, has already left Gavin, 28, and Krystle, 26, blind and is soon expected to rob them of their hearing.
And with no cure in sight the disease, which also causes loss of smell, kidney failure, breathing problems, loss of balance and coordination, and seizures, has a typical life expectancy of just 35.
The degenerative illness has also left Krystle battling severe mental health issues. They first raised their head in late childhood, when her personality began to change dramatically from day to day.
Mrs O’Farrell said: “It’s a horrible, cruel condition and there’s no cure.
“When they were babies we had no idea there was anything wrong. They were both born normally and there were no complications.
“But it’s a death sentence. I just hope I’m always here for them.”
And just last month, Wolfram Syndrome UK launched it’s 2014 national awareness campaign in the form of a charity road trip, where driving teams visited all 25 major children’s hospitals across Britain, including Yorkhill Children’s Hospital in Glasgow, travelling 9,000 miles in less than 60 hours.
Tracy Lynch, the charity’s chief executive, said: “We embarked on this campaign specifically within the medical profession to increase knowledge and decrease diagnosis times and ultimately reduce suffering for those affected.
“One diabetic consultant of 15 years had not even heard of this life-limiting condition but was desperate to learn more.”