Family of Billington girl raise awareness of Cystic Fibrosis (From Lancashire Telegraph)

Family of Billington girl raise awareness of Cystic Fibrosis

1:00pm Monday 31st December 2012 in News

THE family of a six-year-old who suffers from cystic fibrosis have said they are determined to raise awarenessof her condition.

Holgate, from Billington, attended a special family day organised by Christine and Norman Atty from The Dog Inn, Whalley, and Mags Twist to raise the profile of the disease.

Mum Andrea said Sophie was diagnosed with the condition when she was eight and a half months old.

Andrea said Sophie had always been an unsettled baby, crying a lot and being sick.

She said: “When you kissed her she tasted salty, and that is one of the classic symptoms of a baby with cystic fibrosis because they sweat so much.”

Andrea said the day was all about raising the profile of Cystic Fibrosis - a disease caused by a faulty gene that controls the movement of salt and water in and out of cells in the body.

It affects internal organs by clogging them with the thick sticky mucus which makes it difficult to breathe and digest food.

She said: “It’s the most common hereditary life-threatening illness and one in 25 people carry the gene. People need to be made more aware of it.”

Cystic Fibrosis causes mucus on the lungs which leads to people suffering a lot of chest infections.

Sophie also needs daily physio to help keep her airways clear.

Andrea said: “She has to take a number of tablets every time she eats anything as well as antibiotics. Even if she has a chocolate, she has to have three tablets with it.

“During the day, she must have 15 tablets with her meals, and at one point she was on medication that, when listed, covered two sides of A4 paper.

“The medication is the only thing that keeps her going. It’s a necessary evil. It’s a constant battle to keep her well.

“In the six weeks holiday I made it my aim to make her be able to swallow tablets, rather than us having to crush them and sprinkle them on her food, or give her liquid medication.

“She can do everything that other children can, and to look at she looks like any other little girl.”

Mags said: "Thank you to face painter Sarah Gannon who was fantastic, Daniel the balloon man, Father Christmas, who made a special appearance, and Becky Edwardson, Jake Edwardson and Mike Reid for helping on the stalls. Thank you also to The Hellcats who performed for free and All Occasion Sweet Shop at Rishton who donated the Sweets Hampers."

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