Hamish Hughes almost died three times in his first five days of life. Since then, he has constantly been in and out of hospital and suffered through 14 operations as a result of his condition, cystic fibrosis.
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Cystic fibrosis is a genetic disease that affects a number of organs in the body - particularly the lungs and the pancreas - by clogging them with a thick and sticky mucus. Because of this, people like Hamish develop a chronic cough and find it difficult to absorb fat and put on weight, while a slew of related conditions ultimately cuts his life expectancy to be shorter than most.
“You really need to become a geneticist, a doctor, a pharmacist, and a nurse when you have a kid like Hamish,” his mother, Katrina Hughes, said.
“And now because he’s getting older, he is realising the full impact of his illness.
“It’s really terrible and he hates hearing it but their life expectancy isn’t great, the reality is that if they hit 27 and 30, they’re doing really well.
“And there’s also the risk of not being able to have children, so it’s a really emotionally draining disease.”
So draining that Mrs Hughes doesn’t know what they would have done without the support of Cystic Fibrosis ACT, the Queanbeyan Lions Club and the greater community. The Lions Club in particular has supported the family by raising funds to purchase a specialised bed for Hamish that aids him in sleeping through the night without the hindrance of a mucus build up.
“Generally the CF committee is really good with dealing with any needs that you may have, such as vitamins, and sometimes they also help with small subsidies,” she said.
“But we were really lucky to move to Googong, because the Queanbeyan Lions Club have come on board and they’re paying for Hamish’s basketball to help keep him active, they’re now helping him out with his vitamins, and they have bought his bed which is just unbelievable.
“Local foundations like that mean a lot when you have a kid with illness, and even little bits help.”
Cystic Fibrosis ACT will be raising funds for Hamish and more than 100 other CF sufferers on Sunday, July 31, when it’s annual 6500 Santa Speedo Shuffle hits the shores of Lake Burley Griffin. The event involves the participation of more than 100 Santas as they strip to their Speedos and run as many laps around the lake as possible in 65 minutes. Registrations are open now. For more information, visit http://www.cysticfibrosis.org.au/act/