Nine month-old Benjamin McLean’s parents Sandra and Jesse are fundraising for a cure for his life-threatening disease.
Benjamin suffers from cystic fibrosis (CF), a genetic disease that causes unusually thick mucus to form, which clogs his lungs and digestive system.
At just nine months of age little Benjamin has already had two surgeries related to complications from his CF.
There is currently no cure for the disease, so Benjamin’s parents do what they can to keep his airway clear and his bowels working properly.
“We do things like chest physio three times a day to loosen the thick mucus in his chest,” said Benjamin’s mom Sandra. “He takes digestive enzymes before every meal … and we also give him extra salt supplements four times a day.”
The salt helps break down the thick mucus Benjamin’s body produces. “One of the main problems with CF is with the salt pump in the cells, so it doesn’t do what it’s supposed to do,” Sandra said. “For you and me, salt in the body helps keep mucus thinned out and moving along in the digestive system and lungs. But with kids with CF, their salt pump at the cellular level is not working.”
Canada is making great strides in finding new treatments and possible cures for CF, thanks to an investment of over $150 million by Cystic Fibrosis Canada into leading-edge research since 1960.
In the 1960s a child with CF was not expected to live until he reached kindergarten.
“Today the median age of survival of Canadians with cystic fibrosis is among the highest in the world, at 49.7 years of age in 2012,” the Cystic Fibrosis Canada website states.
Sandra and Jesse plan to do what they can to help increase the survival rate and ultimately find a cure for their son and the thousands of others suffering with CF.
The parents will take part in the Great Strides walk to raise money for continued research through Cystic Fibrosis Canada this Sunday, May 25.
The walk is in New Westminster, so the Coasters will have to travel to take part, but they’re looking forward to the chance to fundraise for a cure.
“They are telling us that a cure is literally right around the corner,” Sandra noted.
“So hopefully in Ben’s lifetime we’ll be able to have access to a drug that will really reverse everything at the cellular level that’s happening to his body.”
Sandra set their online Great Strides goal at $1,750 but said she had to raise it three times, after generous givers surpassed her expectations repeatedly.
“We’re at $4,405 right now,” Sandra told Coast Reporter Tuesday, as she debated raising the goal one more time. “The support has just been amazing.”
If you would like to give to the McLeans’ Great Strides walk you can do so online at www.cysticfibrosis.ca/greatstrides. Click on “sponsor a participant” and search for Sandra McLean to donate.
If you would rather donate by cheque or cash, contact Sandra at 604-347-7907.
Find out more about CF at www.cysticfibrosis.ca.
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