Cystic Fibrosis Foundation forges ahead for Hernando fundraiser

Maddison Rae Tarulli, 7, was diagnosed with cystic fibrosis during a routine newborn screening. She has since become the Hernando County face of cystic fibrosis. This year, because of COVID-19, the annual Weeki Wachee Great Strides Walk will be virtual through July.

BROOKSVILLE — Maddison Rae Tarulli is Hernando County’s most featured face of cystic fibrosis. Now 7, the Brooksville beauty is once again leading the way for a cure through the annual Weeki Wachee Great Strides Walk. It is her fifth year.

But COVID-19 has a hand in how this year’s main fundraising event is playing out. Requirements for social distancing have forced a virtual fundraiser instead of the annual event. But for cystic fibrosis, a lung disease, adjustments are welcomed.

Maddison’s paternal grandmother, Penny Johnson, has been leading the fight since her first grandchild was diagnosed at birth from a newborn screening. After a few days of understandable fear, she found her stability through the Cystic Fibrosis Foundation.

She has led Maddison’s team since.

While memories flood Facebook of previous events, moved from Homosassa to Weeki Wachee State Park three years ago, enthusiasm for a scaled-down virtual walk is still high. It’s about the cure after all.

Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time, according to the Cystic Fibrosis Foundation. A defective gene causes the buildup of mucus in the lungs, pancreas and other organs. When mucus builds up in the lungs, the airways become clogged and lead to lung infections. Mucus in the pancreas prevents the organ from producing enzymes needed to break down foods necessary for the body to absorb vital nutrients.

For Maddison, consistent breathing treatments to break down the mucus while taking enzyme tablets before every meal have made life bearable.

“She takes them like their nothing,” said Johnson.

CF maintenance has become young Maddison’s way of life. And she undergoes a yearly check to ensure she stays healthy.

Johnson said the adjustment to Maddison’s condition took time. And when COVID-19 entered the equation, more adjusting was necessary. They keep the creative and active little girl busy with all the things her peers enjoy, with restrictions. But she is isolated with family and serious extra precautions have been put into place.

No cure exists for cystic fibrosis, and the foundation depends on the annual walks to raise money for research for a cure. Each year, teams form to raise funds, all of which is donated to CFF. They also work diligently to bring awareness to the disease and the importance of continued research to find a cure.

But, because of COVID-19, virtual is how it’s being done. Donations are 100% tax deductible and will be accepted through the month of July. Prizes for the most donations will include a 52-inch Smart TV and tickets to future events and more.

To donate, call Penny Johnson at 352-442-9469 or visit https://fightcf.cff.org/site/TR/GreatStrides/36_Florida_Tampa?px=2981053&pg=personal&fr_id=7911.