Schoolgirl has energy disease

Karen Shaw, 35, has been denied disability benefit for her nine-year-old daughter Holly-Rose despite her having a rare condition which means she can not store energy.  Picture: Liz Mockler D2615LM
Karen Shaw, 35, has been denied disability benefit for her nine-year-old daughter Holly-Rose despite her having a rare condition which means she can not store energy. Picture: Liz Mockler D2615LM
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NINE-YEAR-OLD Holly Rose Lindley may look like a normal schoolgirl, but she has an illness which means she is unable to store any energy.

Holly, a pupil at Shaw Wood Primary School, was diagnosed with the illness at around 18-months old when she collapsed and had to be resuscitated by a neighbour.

Other than being lethargic, her family had no idea about the potentially life-threatening condition.

After months of her early life in and out of hospital in Sheffield she was finally diagnosed with Glycogen Storage Disease type 9, which means she is unable to process the foods she eats into energy, and if she does not eat regularly she could fall into a coma.

Mum Karen Shaw, 35, said: “At one stage we were having to give Holly food every two hours, which meant waking her up through the night to get her to eat a piece of toast.

“For the first three years it was very, very difficult.

“We had to make sure she always has a drink with her and if she does P.E she has to have a drink before.”

Holly now relies on having four spoonfuls of cornflour mixed in with cold milk before bed time to give her enough energy to last through the night, but as she gets older this mixture will go up to nearly double the amount.

She also has to have regular checks to make sure her blood sugar levels are at a healthy level to prevent her condition getting worse.

Holly’s condition has meant that until recently she was unable to take part in activities such as sleepovers, but as she grows it is hoped she will be able to manage the condition by herself.

The family, who live in Pinewood Avenue, Armthorpe, with stepdad Alan, 41, sons Liam 16, and Sean, 13, have been rejected with their application and appeal for disability living allowance, but are unhappy at the reason given. They were rejected for their claim for support on the basis Holly does not need any more care than any other nine-year-old girl, a claim which the family dispute.

Karen added: “She can’t store energy and we have to go to Sheffield every six months so I don’t know how they can say she doesn’t need extra care.

“It is not the point about the money it is the fact they have told us she doesn’t need and more care than a normal child her age.”