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News Archive > General > Special evening for Evie

Special evening for Evie

By 6th March 2013

A NEWQUAY mother has begun a fundraising mission to help raise both awareness and funds for a rare disease.

Gemma Masters held a charity open-mic night in Porth last Thursday evening in a bid to raise vital funds for Alpha-1 UK Support Group.

Alpha-1 antitrypsin deficiency is an inherited, genetic condition that is passed from generation to generation and is an illness Gemma’s seven-year-old daughter Evie suffers from.

Alpha-1 antitrypsin (AAT) is an enzyme produced in the liver to help protect the tissues of the body from damage during infections. The low level in the blood occurs because the AAT is
misshapen and cannot be released from the liver at the normal rate. This leads to a build-up of the abnormal AAT which can cause liver disease and tissue damage, especially in the lungs, and which can eventually cause serious lung damage.

The evening at Estrella Morada Bar de Tapas at Porth saw £241 raised in a raffle and £100 given for fellow sufferer Mel Brolly to get up and sing.

Gemma said: “Mel can’t sing, so people donated to get her to sing a song which was the Chelsea anthem which is her pet hate. She did it and everyone was clapping and cheering.”

Around 30 people attended the event which also helped raise awareness of Alpha-1. Gemma said: “Only 5% of children show symptoms as a child. As a result of it, Evie gets recurrent chest infections and suffers poor weight gain. We have been battling to find out what is wrong with her since she was born seven years ago. It apparently takes seven years to detect but, even though you are born with it, people don’t think to test for it because it’s so rare.”

Money raised for Alpha-1 UK Support Group will help families. Founders of the group, Karen North and John Mugford, list their aim as being able to get treatment centres all around the country. I’m really pleased with how much we raised because I wasn’t expecting much as it was our first event. We are thinking of putting on an X-Factor style event soon after seeing the success of Mel singing to raise money – so watch this space!

“I would like to thank Estrella Morada Bar de Tapas as well as Joe Hurworth and everyone who donated raffle prizes.”

By 6th March 2013

paulette robinson 6th March 2013 16:51
Good on you, Jemma!!!!!
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