Cystic Fibrosis Fundraiser Hits Home for Local Family

By Julia Rose

Published 05/02 2014 06:39PM

Updated 05/02 2014 06:42PM

Cystic fibrosis affects roughly 30,000 children and adults in the United States every year.  It's a chronic disease that attacks people's lungs and digestive systems and there's still no cure for the disease.

People across the country and right here at home are walking to raise awareness and funding.  For one local family, the “Great Strides: Walk Today. Add Tomorrows” event holds a very special meaning.

"I miss her, she was a fighter,” said Diane Jackson.

Jackson is talking about her daughter, Michelle.  She was a fighter indeed but lost the battle to Cystic fibrosis six years ago.  She was just 22 years old.

"As she was growing up, she had to take multiple pills and medications to take care of the symptoms of the cystic fibrosis,” said Jackson.

Cystic fibrosis is hereditary.  A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and the body's ability to breakdown food.

"She had to have these capsules opened up and the enzymes sprinkled into her food every time she ate,” says Jackson.

Michelle became very sick in 2008.  She was transferred from Syracuse to a hospital in Philadelphia.  She waited for a lung transplant for three months but never got one.  Now, Diane, Michelle’s sister Stacey and other friends and family participate in and help organize the “Walk Today. Add Tomorrows” event.

"It’s to raise money for research for this disease,” said Jackson.

Michelle participated in the walk every year up until the year she passed.  Jackson says the event also helps raise awareness about the importance of organ donors.

"She fought for almost three months and then she ended up never getting the lung transplant, one never came available that was a match for her,” said Jackson.

New York State ranks 49th out of 50 in terms of registered organ donors.

The walk is going on Saturday at Griffiss Park in Rome.  Check-in is at 10:00 am.  There will also be information for those interested in registering as organ donors

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