Lexie Zotta

Maggie's Great Strides Story

What is Cystic Fibrosis? To be honest, we knew nothing about it prior to Maggie’s diagnosis. When the doctors called us with the news, we immediately panicked because we were completely uneducated and unaware of what it is. CF is a rare genetic disease that affects the lungs, pancreas, and other mucus-producing organs.

There are various mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene that cause the CFTR protein to become dysfunctional. When this protein is unable to operate correctly, chloride is unable to move to the cell surface. Without chloride attracting water to the cell surface, it allows mucus in the organs to become thick and sticky, which creates a host of issues. Maggie has the respiratory and the pancreatic mutations. 

Respiratory: Maggie’s airways are susceptible to becoming clogged and trapping germs if the thick, sticky mucus builds up. She is more immunocompromised than the average kid since her lungs will naturally want to hold on to any bacteria it retrieves. To stay ahead of this, we do chest physiotherapy twice a day with a vest machine. We also do breathing treatments through a nebulizer twice a day, at the same time as the CPT. If Maggie gets sick, these steps are increased to every 4-6 hours. Respiratory illness with CF can lead to hospitalizations and potential lung damage.

Pancreas: thick mucus buildup prevents digestive enzymes from releasing and absorbing food and nutrients. This results in poor growth and malnutrition. To treat this, Maggie receives enzymes before every bottle. They are in pill capsules, which we break open into a bean-sized amount of apple sauce and feed them to her by mouth. She will most likely be on enzymes for the rest of her life - having to take them before anything and everything she eats.
Our daily routine is very busy and some days it can feel very overwhelming. But we are thankful for science and our great care team at Children’s Healthcare of Atlanta! Research has uncovered so many great new treatments that are proving to expand the life expectancy of people with CF, and for that we are blessed.

There is currently no cure for cystic fibrosis. By participating in Great Strides, we are helping to end this disease for thousands of people impacted by CF.

The Cystic Fibrosis Foundation has made extraordinary progress — including fostering the development of more than a dozen CF treatments — but these treatments are not a cure and not everyone can benefit from them. We must keep going.

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By donating to my fundraising goal, you will help advance our mission for a cure for all. Please consider joining us and helping make CF stand for Cure Found.