Maddison Rae Tarulli is only 2 but the Brooksville toddler has already done more to bring awareness to cystic fibrosis than many adults.
On Saturday, a football signed by Heisman Trophy winner and Florida State University quarterback Jameis Winston will be auctioned with the proceeds being donated in Maddison’s name to support the Cystic Fibrosis Foundation.
Harry Johnson holds his granddaughter, Maddison Rae Tarulli, with John and Sallie Prince as they were given the Heisman Trophy Award football, signed by FSU quarterback Jameis Winston. The football will be auctioned at a banquet after Saturday’s game between Florida State and the University of Florida. Proceeds from the auctioned football will be donated to the Cystic Fibrosis Foundation on Maddison’s behalf.
Maddison was diagnosed at birth with cystic fibrosis, leaving her family devastated and uncertain about her future. But a lot can happen in two years, especially when her family decided they had no time for self pity. They would do whatever was necessary to help Maddison thrive.
Her grandmother, Penny Johnson, stumbled on the Cystic Fibrosis Foundation online and latched onto their support. She became active with local foundation representatives and began reaching out to family and friends to help build Team Maddison Rea for fundraising.
The family participated in the Cystic Fibrosis Foundation Walk, held in Homossassa, before Maddison took her first step. They held various fundraising events in the community, including softball tournaments, live concerts and a bicycle roundup where donated bikes were auctioned at a 5K bike ride in Vera Beach.
All money raised was under Team Maddison Rae and donated entirely to Cystic Fibrosis Foundation in hopes of finding a cure for Maddison and countless others diagnosed each year.
Team Maddison Rae made such an intense statement about the power of persistence that Maddison was chosen to represent the foundation, her photo and story being shared nationally at teaching conferences and workshops sponsored by the foundation.
Even the Enrichment Center at Bayfront Health Brooksville recognized the incredible work Maddison’s family had done so far to bring awareness and funding to a disease that effects as many as 30,000 children and adults in the United States. The Enrichment Center, which has raised funding for the foundation for four years, decided to place this year’s donations into a special college fund for Maddison.
“Everything is really coming together for Maddie,” said Johnson, who explained the tremendous stress the disease puts on the entire family. Maddison’s parents, Thomas Tarulli and Danielle Whitman, work full time while balancing Maddison’s breathing treatments and keeping her safe from exposure to illnesses that might cause deadly consequences. The entire family has stepped in.
The Heisman football, another unique twist in this story of hope, came about quite by accident, a simple “right place, right time” cliche. Johnson, who was a home health nurse more than 10 years ago, took care of and befriended Leslie Prince, who has multiple sclerosis.
Leslie’s parents, John and Sallie Prince, have led a project to help fund MS research in honor of their daughter by obtaining footballs signed by the Heisman Trophy Award winner each year to auction off in support of MS.
John Prince’s father, Williard Prince, was editor and publisher of the DAC Journal, described as the “house organ of the Downtown Athletic Club in lower Manhatten.” Williard Prince founded the Heisman Trophy Award in 1935.
To honor his father’s passion after his death, John crusaded the Heisman Trophy Award football donation project, auctioning the previous year’s signed football at the home game of the Heisman Trophy winner. The money from the auction would then be donated to the MS Foundation chapter in that city.
After learning of Maddison’s diagnosis and the family’s incredible efforts to raise money for the Cystic Fibrosis Foundation, the Princes elected this year to honor Maddison and support the foundation.
It was a huge gesture, one Johnson didn’t realize at the time. Although her husband and brother knew of the Heisman Trophy Award, she had no idea. “I laugh at it now,” she said.
Unfortunately, Maddison won’t be well enough to make the trip to Tallahassee on Saturday. She is battling a cold that could turn dangerous if exposed to other illnesses. But her photo will be on display as the Heisman Trophy Award football is auctioned.
Last year’s ball went for $26,000, Johnson said. She doesn’t expect that response but is thankful for even the starting bid of $1,500.
Still riding the waves of adapting to life with a child with cystic fibrosis, Maddison’s family is thankful for the lifeline they received from the Cystic Fibrosis Foundation and will continue to advocate for the cause.
“She has changed my life for the better forever,” Johnson said about her granddaughter. “I’m so devoted to CFF and finding a cure.”
Email Hernando Today correspondent Kim Dame at email@example.com.