SPRING HILL — When Penny Johnson celebrated the birth of her first grandchild, Maddison Rae Tarulli, she was elated. But two weeks later, her heart was breaking when Maddison’s newborn screening revealed the tiny newborn had cystic fibrosis.
Fast forward five years. Johnson is now preparing for the 2018 Cystic Fibrosis Foundation’s Great Strides Awareness Walk, scheduled for July 14 at Weeki Wachee Springs State Park. This is her sixth walk, the fifth as chairperson of the CFF Southwest Chapter.
It’s been a journey, the grandmother of two said. But once inducted into the unique group of others fighting for the cause, Johnson was all in.
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 with CF 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 insure she stays healthy.
Unknown to those on the outside, people with CF struggle with nutritional roadblocks. Maddison’s current challenges include maintaining enough weight to avoid a feeding tube. The scale hovered at around 37 pounds, insufficient for a 5-year-old. But her most recent checkup tipped the scale at 49 pounds. “She has her days when she eats everything in sight,” Johnson chuckled. Other days she barely eats. But for now, the tube is not necessary.
CF is carefully monitored through quarterly medical visits and an annual complete overhaul that includes blood work and x-rays.
Cystic fibrosis presents differently in each person. Lucky for Maddison, her disease has been controlled and the energetic little girl has enjoyed a nearly typical childhood. Her parents, however, must be diligent to protect her from illnesses that could complicate her condition. But they have learned to fit her disease into their routine and make sure their daughter lives as normal a childhood as possible.
She will enter kindergarten in the fall.
No cure exists for cystic fibrosis. And CFF depends on the yearly walks to raise golden money for research into a cure. Each year teams form to raise money, 100 percent 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.
The Southwest Chapter will hold the Great Strides Walk at Weeki Wachee for the second year. The park will reopen specifically for Great Strides at 6 p.m. on July 14. Walkers will proceed through the park, ending at Buccaneer Bay, where a celebration will then kickoff with a live DJ, food, prizes and activities. There will be photo opportunities with the Weeki Wachee Mermaids throughout the park.
There is still time to organize a team and campaign for donations. Johnson hopes each walker will contribute $20 to the cause before receiving a wristband and entry into the family friendly event.
For more time information, visit GreatStrides.CFF.org or call 813-374-9041.