Little Emma Gardner will have to take daily medication for the rest of her life after being born with a deadly genetic condition.
Two-year-old Emma was diagnosed when she was just eight-weeks-old with cystic fibrosis, which affects her breathing and digestive system.
Sufferers on average live only until their 30s and her mum Ellen, 38, and dad Andrew, 42, want to raise awareness of the condition and help raise cash for a cure.
Ellen, who quit her job as a nursery nurse and teaching assistant at St Aidan’s Primary School, in Hartlepool, to look after Emma, said: “We were devastated when we found out she has cystic fibrosis because we felt we had a perfect baby in front of us and she didn’t look ill.
“We couldn’t do anything but cry for the first few weeks. But the hospital says she is doing really well.”
The disease is caused by a genetic abnormality that one in 25 people have. Both parents have to have the abnormality to pass it on to their children and if they do then there is a one in four chance that their baby will have cystic fibrosis.
There is around 8,000 people who suffer with the condition in the UK, including Prime Minister Gordon Brown’s son Fraser who was diagnosed in 2006.
The condition means that Emma cannot absorb fat properly and she needs medication every time she eats to counteract the problem caused by an abnormality with her pancreas.
She also has to do physiotherapy three times a day to help loosen the build-up of fluid in her lungs and mum Ellen says trampolining is a good exercise for her.
Emma needs to take extra medication when she gets a chest infection and she spent two weeks in James Cook University Hospital in Middlesbrough earlier in the year but medics are pleased with her condition.
Ellen, of Fernwood Avenue, Hartlepool, added: “She’s fine with it and just gets on with it. The exercises we do she has just taken in her stride and she often tells us when her medicine is due. It’s all part of her daily routine. Kids are so resilient.”
Dad Andrew, who is a funeral director at Mason and Gerald Martin Funeral Directors, Park Road, and the couple’s other daughter Laura, nine, are taking part in the 199 Steps fundraising walk in Whitby on June 14 to raise cash for the Cystic Fibrosis Trust.
Also taking part is Ellen’s sister Elaine Mason, 46, and her husband Ian, 47, and their two sons, Adam, 15, and 12-year-old Joseph.
Anyone wanting to back the family’s fundraising effort can do so by logging onto: www.justgiving.com/andrewgardner4
More information is also available on the condition by logging onto: www.cftrust.org.uk