Most 3-year-olds thrive on the consistency of a routine, but for Blake Brien sticking to a strict schedule is critical to his health.
Blake lives with Cystic Fibrosis, the most common fatal genetic disease affecting Canadian children.
Due to a genetic abnormality, there’s a build-up of thick, sticky mucus in his airways making him vulnerable to frequent infections and irreversible lung damage.
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In order to keep his airways clear and lungs functioning at their highest capacity, Blake requires regular treatment — twice a day undergoing chest physiotherapy and positive expiratory pressure therapy.
The combined therapies help loosen the build-up of mucus in his lungs, making it easier to cough up. According to Blake’s mother Erin, the treatment plan becomes even more important when he catches a cold.
“He’s coughing more and he’s more lethargic and his breathing is more difficult and challenging and he finds it really hard to keep up with the other kids,” Erin said.
New hope for young fighter
But promising medical research and major advancements on in treating the disease are providing new hope to the family.
Seven scientists at Dalhousie Medical School are currently studying the disease from different angles.
Microbiologist Dr. Zhenyu Cheng is working to fight one of the most dangerous germs affecting those living with the disease — a bacterium commonly found in the environment called pseudomonas aeruginosa.
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Once it gets into the airways of those living with CF, it’s almost impossible to eradicate. Nearly a third of children living with CF will develop a chronic pseudomonal infection.
“We are trying to develop drugs that can enhance the effectiveness of existing antibiotics, and if we have better drugs to treat these bacterial infections we can also alleviate the damaging inflammation in the lungs of CF patients,” Cheng said.
Dr. Cheng’s research is just one of 52 projects being funded by Cystic Fibrosis Canada this year alone.
Lisa Weatherhead, executive director of Cystic Fibrosis Canada for the Atlantic Region, says research is critical to improving the life expectancy of those living with CF.
“Every time research is done, we learn more about drug therapies, about physical therapies and that changes how our clinicians practice and the recommendations that they make, so for Blake, he has the ability to access more positive health outcomes every year that goes by,” Weatherhead said.
Blake’s Believers hope to change what “CF” stands for
Erin says there have been great strides with the development of treatments and medical advances since Blake’s diagnosis more than three years ago.
While she does what she can everyday to keep Blake as healthy as possible, she also makes a special point of contributing to the ongoing research.
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Blake’s family and friends will be taking part in the CARSTAR Walk to make Cystic Fibrosis History on May 29th. Their team, Blake’s Believers, has a fundraising goal of $15,000. Funds Erin hopes will ultimately lead to the eradication of the disease.
“I know there’s a drug they’re working on right now that almost totally takes away the symptoms. I really feel hopeful that someday ‘CF’ will stand for ‘cure found’ and he will just live a normal life.”
People can make a donation to Blake’s Believers here.
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