A MOTHER whose daughter is suffering from a terminal illness has been nominated for an award after she raised more than £44,000 in a year.
Kelly Phillips, 34, first discovered her seven-year-old daughter Harriet had Rett Sydrome at 18 months, after she began to show signs of learning problems.
Rett Sydrome is a condition, found only in girls, which is a protein deficiency in the brain leading to a variety of potentially fatal conditions caused by a loss of motor control such as daily seizures, breathing difficulties, tremors and digestive problems.
“Girls with Rett are always born with no signs of any health issues at all,” said Kelly, who has been nominated as a ‘fundraiser of the year’ in the National JustGiving Awards 2012.
“But then at then between the age of 18 months and two years, they suddenly stop doing things they normally would, or advancing as they should. For example, with Harriet, she stopped saying the few words she did and she stopped walking.
“It’s like having a little girl who suffers with a mixture of cystic fibrosis, Parkinson’s, autism and cerebral palsy. When Harriet was diagnosed I was just so gutted.
“We had her wedding planned before she left the hospital after being born, and to have that all taken away from you is just devastating.
“Harriet doesn’t talk, she doesn’t walk and she doesn’t feed herself and needs a feeding tube. If things remain the way they are she’s unlikely to make it to 30, and if she does she’ll need daily one-to-one care.”
But Kelly, who is from Saunderton, still remains positive, safe in the knowledge that a potential cure has been found, as Rett has now been reversed in a laboratory.
“It’s not like with other diseases, we know what’s wrong and we know how to reverse it, all we need is the funding,” she said.
“I’m not going to lie, I’m not doing this for any other reason other than to find a cure for my daughter, but these girls need the cure now – they don’t have the luxury of waiting.
“Just out of the people we know, in the space of three months last year three girls died. And Harriet doesn’t have brain damage, so she still stands a chance of being cured.”
Kelly has been fundraising for 12 months now with most donations being made through JustGiving for the Rett Syndrome Research Trust, also based in Saunderton.
And as a result of her fundraising achievements, she has been nominated ‘fundraiser of the year’, as part of the National JustGiving Awards 2012. The Rett Syndrome Research Trust has also been nominated ‘best new charity’. The results of the awards will be revealed on March 1.
To sponsor Harriet visit www.justgiving.com/Hope4Harriet or for more visit www.reverserett.co.uk