‘Miracle’ drug could be key to new life for Millom girl
Last updated at 10:09, Friday, 05 September 2014
ONE-YEAR-OLD cystic fibrosis sufferer Sylvie Thompson from Millom is waiting on a “miracle” drug which doctors say could reverse the effects of the disease.
Mum Bethany Evans, 26, of Oxford Street, Millom, says the life-changing drug will be given to her 17-month-old daughter Sylvie when she turns six.
Miss Evans said the youngster was diagnosed by heel prick test at four weeks old.
She said: “The gene make-up she has means she can have a new miracle drug which reverses the effects of the disease. She will still have to have lots of medication but it will mean she will be able to digest food properly.”
Her mum and dad, Colin Thompson, 31, of Oxford Street, feed Sylvie through a tube in her stomach.
Miss Evans said: “She had the tube put in as a permanent fixture in an operation a couple of months ago.
“We’ve been told she’ll definitely get this new drug which is on trial. When she does it will mean she’ll be able to eat like a normal child.”
Miss Evans said Sylvie has to have a very different diet to her two-year-old sister Skyla. The condition affects her digestive system and makes it difficult for her to put on weight. Miss Evans has to add salt, cream and thick amounts of butter to Sylvie’s food.
She said: “It’s all the things you wouldn’t normally give to a baby. We have to add lots of salt to her food and give her higher-calorie food than we give to her sister.
“Her diet is completely different to any other child.”
Physiotherapy is given to Sylvie up to twice a day when she is particularly unwell.
Miss Evans said: “It can be difficult because she’s more prone to infections. We have to be careful of things like wet flannels because they can get bugs.
“We have to call ahead if we’re staying at a hotel to make sure there’s no damp or mould. We have to take a lot of stuff with us too.
“We try not to wrap her up in cotton wool, but we’re just worried parents.”
She said Sylvie had suffered a number of infections including pseudomonas. Miss Evans added: “It was a very serious infection and we had to double the amount of medicine she had.
“She still has about six different types of drugs on a daily basis.”
The “miracle” drug Kalydeco is being trialed on three-year-olds, but is readily available for six-year-olds.
First published at 09:45, Friday, 05 September 2014
Published by http://www.nwemail.co.uk
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