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Mum Tells of Battle to Find Treatment for Daughter
5:29am 15th February 2013
Pirate FM has learnt that a Newquay schoolgirl has spent her whole life in and out of hospital because of a rare genetic illness.
Seven year old Evie Masters has Alpha-1 Antitrypsin Deficiency.
It means her body does not produce enough of a protein that protects our lungs and liver from damage.
She suffers from chest infections and could end up needing a transplant in later life.
Mum Jemma says ten days after being born, little Evie went blue: "I was told she probably wouldn't make it through the night. Her lung collapsed, she had pneumonia and she was in Treliske for the first six months of her life.
"If it's not treated correctly it can lead to transplants. It's at the back of my mind, because we don't know what the treatment is or what her long term life expectancy is.
"When Evie is sick everything sort of stops - and it's normally three weeks out of the month she's ill for.
"But she always makes people smile. She doesn't complain about being ill - she just gets on with it."
Jemma has started a Facebook campaign called Squeezy's Story; the name given to Evie by a nurse at Treliske because she is so small.
The campaign is hoping to raise awareness as well as money for better diagnosis and treatment in the UK.
At the moment, the closest available centres are in America.
Charity Alpha-1 UK Support Group is calling on local people to sign an e-petition to try to get that changed.
Spokeswoman Karen North says: "Not very many specialists in the country even know about Alpha-1 so it's rarely tested for, rarely diagnosed and if diagnosed, there isn't a treatment in this country available for it."
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