A NORTH YORKSHIRE mother whose daughter died from an extremely rare genetic disease has vowed to continue her fight for more research into the condition.
The funeral of Marcie-Mae Barker, two, was taking place in Scarborough today.
But although her death has devastated her family, including Marcie-Mae's great grandfather, Alf Barker, who lives in New Earswick, York, they are determined to celebrate her short, but remarkable, life.
Marcie-Mae was born with non-ketotic hyperclycimaeia, from which only four other children in the country have suffered, and this left her unable to open her eyes properly, or walk or talk.
Her mother, Kelly Barker, 23, said her daughter's death had not yet sunk in, but she was expecting to feel "very lost without her."
However she was determined to keep in contact with families of other sufferers of the genetic disease and is backing calls for more research.
Miss Barker, of Westway, Scarborough, said: "When Marcie-Mae was born they said her life expectancy would be seven at the most.
"Doctors and Marcie's consultant were very shocked when they realised she was dying. They expected her to live until five or six.
"She went to Martin House Hospice at the end of October, but I really wanted to bring her home, which I did on November 14.
"No one expected her to live more than a week really, but we had her birthday, then Christmas and New Year together.
Marcie-Mae died on Sunday - the day before Miss Barker's birthday.
"She slept in my room and when she died it was very peaceful," said Miss Barker.
A funeral service was taking place today at Scarborough Crematorium followed by a wake at a local pub. Donations were going to Martin House Hospice, near Wetherby.
Miss Barker said: "Marcie-Mae touched so many people's lives. We have had an unbelievable response from people, even complete strangers who had heard about her illness.
"It was always just the two of us, now there's going to be a huge gap. I don't know what I'm going to do or how I'm going to feel, but I will be very lost without her."
Updated: 11:04 Thursday, January 16, 2003
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