Mum pledges to fight after daughter’s death

Dec 27 2009 by Dan Warburton, Sunday Sun

A DOTING mum whose teenage daughter was killed by a rare brain disease has pledged to help beat the condition for others.

Jane Iveson cradled daughter Stacey-Jane in her arms for hours before she finally succumbed to a deadly strand of the generative disease Alpers’ Syndrome and POLG1.

The 19-year-old had battled against the brain conditions that had lain dormant for the first 15 years of her life. Her condition was so bizarre it baffled doctors and left her mum desperate for answers.

The former Blyth Community College pupil fought for life but the combination of the two illnesses made it a deadly condition.

Now Stacy-Jane’s mum has launched a charity drive to fund research in a bid to help doctors understand the terminal illness.

Mum-of-six, Jane, 38, from Blyth, in Northumberland, today opened her heart and told of her anguish and her love for her stricken daughter.

From the family home, she said: “She was so determined and she went from a perfectly normal teenager to needing a wheelchair and needing my care.

“She found it difficult not being able to do what she wanted and not be able to go where she wanted.

“That used to hurt her but she was so brave.

“I think it was quite humiliating for her – she knew she was going to die and she was slowly deteriorating.

“I slept with her at night but we tried to give her a normal life. There needs to be more research on the disease.

“There’s not enough information for people.

“I could’ve made her life so much happier if I had known exactly what her illness was.

“Someone once told me that I was her rock, but they were wrong, she was my rock.

“She didn’t deserve to have her life cut short.”