Maddison Rae Tarulli, 15 months, is a beautiful, vibrant, blue-eyed little girl who is meeting her milestones right alongside her same-aged peers. An active blond-haired beauty with unstoppable energy, Maddison seems to embrace life as enthusiastically as any typical toddler.
But Maddison is anything but typical. She was diagnosed with cystic fibrosis at just one week old, after a routine newborn screening uncovered the defective gene. She was then sent to All Children's in St. Petersburg where the infant underwent more extensive testing to confirm the diagnosis.
According to the Cystic Fibrosis Foundation, cystic fibrosis is a chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). Cystic fibrosis is caused by a defective gene, mutated from both parents.
Thomas Tarulli and Danielle Witman, Maddison's parents, were heartbroken. Her grandparents, Harry and Penny Johnson and William and Lisa Witman were equally devastated, realizing their dreams for this miracle grandchild may not be realized.
Penny Johnson remembered sitting on the sofa for three days, head resting in her hands as she sobbed for her first grandchild. They knew very little about the disorder, she said, except that the disease could be life threatening.
The Brooksville resident pulled herself together long enough to begin a Google search on cystic fibrosis, stumbling on the Cystic Fibrosis Foundation (CFF). "I called the number and the first thing they told me was to stop searching for answers on the Internet," she said.
Johnson was praised for wanting to learn as much as she could about her grandchild's condition but cautioned to believe only verifiable information. And CFF became the family's lifeline. "They all know me over there," Johnson laughed.
They learned that the protein products in the defective gene cause the body to produce unusually thick and sticky mucus. This mucus clogs the lungs (which could lead to life-threatening lung infections) and obstructs the ability of the pancreas to produce natural enzymes that assist in the breakdown and absorption of food particles.
They also learned that Maddison would need regular monitoring to make sure her condition didn't worsen. They would need to keep her away from germs and viruses and learn how to help Maddison keep her lungs clear of the mucus.
The entire family worked as a team, keeping the little girl healthy, protecting her from cold or flu viruses because of her compromised immune system and giving her enzyme tablets at each meal or snack to aid in her digestion. They also monitor Maddison's lung fluid and manage the mucus with a vest she wears at regular intervals to break it up.
A cure for cystic fibrosis depends on awareness and money to help the Cystic Fibrosis Foundation continue the lifesaving research needed.
Through organized walks, CFF reaches out to the community to help raise funds, encouraging teams to organize fundraisers and help bring much-needed funds to benefit the cause.
Maddison's family jumped on board, building a team of more than 30 members, which they hope to double this year, and organized local events to raise money in Maddison's name. Last year, Team Maddison Rae raised more than $4,000, which was donated directly to CFF.
This year, the walk is scheduled for April 26 in Homossassa Springs. And Team Maddison Rae is busy trying to beat last year's goal. They have already held two softball tournaments at Anderson Snow Athletic Park.
Their final event before the walk, Concert in the Park, will be held on Saturday, March 29, at the Hernando Park Bandshell, 205 East Fort Dade Ave., in downtown Brooksville. It will feature four well-known musical acts: Shazadi & Jewels of the Desert, Lawless Intent, Dan Story Band and Dangerous Ground.
Living with cystic fibrosis has changed this family in ways they never thought possible. Although she is too young to understand, Maddison has inspired a community to come together to support a great cause.
There are about 1,000 new cases of cystic fibrosis diagnosed each year, with more than 70 percent of those diagnosed by the age of 2. More than 45 percent of the cystic fibrosis population is over the age of 18, indicating that research is helping CF sufferers live longer. In fact, the predicted median age of survival is now in the late 30s.
Many children who battle the disease struggle with maintaining healthy weight and are typically smaller than their peers.
Maddison seems to be among the lucky ones whose weight and height are in the 50th percentile. Reaching that milestone so young is a strong indicator that Maddison will have full lung capacity as an adult.
Johnson has become so involved with the Cystic Fibrosis Foundation that she and her husband Harry were asked to run the walk this year. They embraced the opportunity and are running with it.
To get involved with Team Maddison Rae or for more information about local efforts to support the Cystic Fibrosis Foundation, contact Harry and Penny Johnson at (352) 442-9460 or (352) 238-4819. Or visit www.cff.org.