Brave Emma battles cystic fibrosis

Emma and her parents
Emma and her parents

BEAUTIFUL Emma Gardner loves nothing more than singing, dancing, swimming and playing the piano.

But behind her adorable smile, the youngster faces a battle against a condition with a life expectancy of just 39 years.

Emma’s loving parents, Ellen and Andrew, felt like their lives had collapsed when their daughter was diagnosed with cystic fibrosis at just six weeks old.

But thanks to the early diagnosis, the St Aidan’s CE Memorial Primary School pupil, who needs regular physio and takes up to 20 tablets every day, does her very best to live like any other bubbly five-year-old girl.

Mum Ellen, 41, says the family are aware the incurable disease will never go, but they are doing all they can to make sure brave Emma stays as strong as she can for as long as possible.

Ellen, who is married to funeral director Andrew, 45, and lives in Fernwood Avenue with Emma and the couple’s other daughter, Laura, 12, a student at English Martyrs RC School and Sixth Form College, described the heartbreaking moment they were told of Emma’s diagnosis.

“It was awful,” Ellen told the Mail.

“Emma looked perfectly well, everything seemed well so for them to come and tell us that was just awful.”

Cystic fibrosis is one of the UK’s most common life-threatening inherited diseases.

It affects the internal organs by clogging them with thick, sticky mucus, making it difficult for sufferers to breathe and digest food.

Ellen and Andrew were both completely unaware they were carriers of the condition, without suffering with it, and admitted they knew nothing at all about cystic fibrosis when Emma was diagnosed.

“I went straight home and straight on to the internet, which is the worst thing I could have done,” said Ellen.

“There you just read all of the bad things and the first thing I saw was the life expectancy.”

Emma was the first baby in Hartlepool to be diagnosed after undergoing a newborn baby test.

The fact medics discovered the condition so early meant Emma could start physiotherapy and medication straight away.

“A lot of people are diagnosed later in life where a lot of the damage has already been done,” said Ellen.

“Looking back, the fact she was diagnosed so early was the best thing that could have happened.

“When Emma was first diagnosed the life expectancy was 31, now it’s 39, our hope is it just keeps rising.”

Emma and her family were recently handed a huge boost after the Cystic Fibrosis Trust revealed enough money had been raised for them to move on to phase two in a gene therapy trial, aiming to correct the faulty gene which causes the condition.

Ellen is also inspired by her close friend, Dawn Braham, who at 41 years old suffers with the condition but lives as normal life as possible, even running her own mobile beauty therapy business.

Ellen said how proud she is of the way Emma deals with the condition.

“She’s aware that has got it but obviously doesn’t really know what it entails.

“She knows she has to take tablets and has to go to physio but she’s a bit young to explain any more to yet.

“Some days she does say ‘I wish I didn’t have it’ but she’s very brave and does well.

“It did take a lot of getting used to but you can’t think ‘what if’, you just need to get on with it.”