When Maddison Rae Tarulli was diagnosed with Cystic Fibrosis five days after her birth, her grandmother, Penny Johnson, found a strength she never knew she had. But it took a few days to stop the seemingly endless flow of tears, she said. Then she began the typical next step of researching for answers on the Internet.
Her surfing ended when she called the Cystic Fibrosis Foundation and a lifeline was established between Maddison’s family and the foundation that is responsible for prolonging and improving the lives of those with cystic fibrosis across the nation.
The family built a team that participated in the Walk for a Cure in Homossassa in 2013. Team Maddison Rae raised the most money that year and went on to break that total in 2014. In addition to obtaining pledges for the walk, Maddison’s family organized several fundraising activities, including softball tournaments and an outdoor concert planned for downtown Brooksville in the Band Shell.
The Summer Jam Benefit Concert will rock downtown Brooksville at the Hernando Park Band Shell from noon until 7:30 p.m. Saturday, with six local musical acts. They included The Black Swans, Shazadi & Jewels of the Desert, Terry Cole & Honkey Tonk Hit Men, John Hindman Band, Jennifer Lee & Navaeh Peek and Dangerous Ground.
Each band generously donated its time and talent for the event and there will be vendors selling food, wine and beer.
The cost of the event is $5 for adults and $1 for children 6-12. Children under 6 are admitted free. Guests are encouraged to bring a chair or blanket, sun screen and cash for venders. Donations will also be accepted.
The event is an effort between Team Maddison Rae and the Hernando Parks and Recreation Department to benefit Cystic Fibrosis Foundation.
“All the money from the event will be turned over directly to CFF,” said Harry Johnson, Maddison’s grandfather, who works for parks and recreation. “If we raise $1 or $3000, it all goes in a general fund to help with treatments, benefits and general support.”
Penny Johnson was inspired when she asked CFF for help.
“They sent me this huge package of information,” she said. The foundation provides support, assistance, and research to help children like Maddison live long and healthy lives.
The family had to learn how to administer special enzymes during meals and snacks and learn how to assist Maddison with lung treatments on a regular basis, using a vest that helps her break up mucus. Their efforts and prayers have kept the little girl thriving.
The efforts of her grandmother have brought national attention to Maddison who celebrated her second birthday recently.
Johnson was a vet tech for a local animal hospital before cystic fibrosis took over her life.
“Working in veterinary medicine was always my dream, since I was a little girl,” she said.
But advocating for her granddaughter and others who find themselves on a similar journey has become her new passion.
“She is grandma’s angel from heaven who gave my life meaning and made me fight for something I never would have thought of,” Johnson said.
“I’m a determined grandmother and I won’t stop.”
For more information, including how to participate as a vendor, call (352) 754-4031.
Email Hernando Today correspondent Kim Dame at firstname.lastname@example.org.