Meridian Star

September 29, 2013

Team Maddie seeks help in finding cure for Cystic Fibrosis

CFF Great Strides 5K Walk, Hillbilly Run slated Oct. 12 in Chunky

By Adrienne Dison
Special to The Star

MERIDIAN —  "I'm Madd-eeee," she says in her best "big girl" voice. "I have SISS-tick fy-BWOH-sus."

    From across the picnic table, her big, soulful eyes barely skim the top edge. She seems much older than her three years as she stretches to sit tall with the grownups. But the playground is calling … She flashes an infectious grin and, with a bat of her long lashes, the vivacious pre-schooler is off and running again.

    It's a "well" day for Maddie, in spite of a mild case of sniffles. Watching her steadfastly maneuver the cross rope ladder and whiz through the tunnel slide, it's difficult to imagine how the day began for Maddie and her family.

    Like most kids her age, Maddie's week is filled with soccer practice, dance lessons, Princess Barbie play dates and episodes of Harry & the Hendersons with plenty of Bug Juice. It's her daily routine that's drastically different.

    Each day begins early with seven different medications to be swallowed, followed by a 20-minute nebulizer breathing treatment and an inhaler to open her airways. Next comes THE VEST – an inflatable chest percussion therapy garment that rapidly compresses and releases her chest wall to dislodge mucus and help clear her airways.

    To Maddie, this 30-minute procedure is known as "Pat-Pats." Essentially, it is the equivalent of a mechanical lung beating.

    "It huhts!"  Maddie declares matter-of-factly.

    Not a favored activity, the vest is a vital part of a twice daily regimen that includes an extended bedtime therapy session. In addition, Maddie must take enzymes before every meal or snack to aid her digestive process.

    And that's just on "well" days. The "sick" day routine can include multiple treatments. Cautiousness around crowds and other children must be vigilantly practiced, as the risk of infection could prove disastrous. A simple cold could potentially cause numerous complications.

    "We are fortunate in the aspect that Maddie has been relatively healthy overall," said her mother, Ashley Luke. "We've only had one hospitalization in three years, and that was right before she turned two," she said, adding that Maddie was also recently diagnosed as asthmatic, a common condition for CF patients.

    Admitting she knew nothing about Cystic Fibrosis before Maddie was born, Luke said her life has been forever changed since Team Maddie was formed  that very day.

    "We began researching this disease, desperately looking for answers. We searched. We read. We studied. We prayed," Luke recalled. "We went to Jackson shortly after she was born and participated in the (Cystic Fibrosis Foundation's) Great Strides 5K Walk for the first time. We knew then that we had to organize a walk here in Meridian."

    And, after forming an alliance with the CFF Mississippi Chapter, Luke and her mother, Dana Peavy, did just that.

    More than $19,000 was raised in the first Walk held at Bonita Lakes in 2011. Named in honor of the late Holly Arthur, who lost the battle against CF just months before, all proceeds from the event went directly to the CFF to support research and development for a cure. In 2012, the Walk was moved to the Lazy Acres Plantation in Chunky, and a fun-spirited Hillbilly Run obstacle race was added in conjunction. The double Walk/Run event raised almost $25,000 for CFF last year. Maddie's family hopes to surpass the $25,000 mark this year with the 2013 Great Strides 5K Walk and Hillbilly Run to be held again at Lazy Acres on Oct. 12th.

    "We've already almost doubled our sponsorships for Team Maddie since last year," Peavy said, emphasizing that funds are raised strictly for the CFF, not for Maddie or her family.

    "It is through their research that in the last decade the life expectancy of CF patients has gone from 18 or 19 years to 37 years. Every dime we raise goes directly to the CFF Mississippi Chapter and helps support important research, new drugs and experimental treatments."

    A recent advancement that CFF has accomplished through developmental research is the new drug Kalydeco, said Laurie Martin, developmental director for the CFF Mississippi Chapter.

    According to web articles published by CFF, Kalydeco™ (previously known as VX-770) is a new oral medication that was approved by the FDA on Jan. 31, 2012, for people with CF ages 6 and older with the G551D mutation of CF. It is the first drug available that targets the underlying cause of CF – a faulty gene and its protein product, CFTR. The drug was developed by Vertex Pharmaceuticals, Inc., with significant scientific, clinical and financial support from the Cystic Fibrosis Foundation. Vertex announced initial results in July from a Phase 3 clinical trial involving people with gating mutations of the CF gene. Study participants who took the drug showed statistically significant improvements in lung function and weight gain, compared with those who received placebo, CFF reported.

    "The goal for this year is to get as many people as we can to attend and hopefully raise at least $25,000. We have great support from our corporate sponsors, which is a hugh part of the event. Education about CF is also important to us. So many people don't know about it. Public awareness … That's another big part of our fundraising efforts," Martin said.

    "While the Hillbilly Run is a light hearted race for the adventurous spirit, our 5K is an honorary and remembrance Walk. Some people just make a few loops, some do it all. It's a national event," she said, adding that the Mississippi Chapter conducts nine Great Strides events across the state every year, relying primarily on event committees comprised of CF families to help with organization and team sponsorships.

    "It's really a grassroots effort, with all of the proceeds going to support our main goals at CFF. It is our mission to develop a means to cure or control CF. We are involved in a lot of research, and we have a network of accredited clinics and specialized care centers where patients can receive care. It's a pretty intricate care program, and CFF provides funding for all 166 centers in the United States, which includes UMC's Blair Batson in Jackson, as well as centers in Birmingham, Mobile, New Orleans, and Memphis, to name a few" Martin explained.

    For Team Maddie, working to find a cure for CF has become a life-long journey – one they want to share with the world.

    "I love to see all the people sponsoring us, but we still need to reach more people and try to educate them. I want the whole community to come out and have a good time. We want them to join us and fight for the cure," Luke said. "There's a lot going on October 12th in Chunky. I want to invite everyone to come meet Maddie and learn about CF and the advancements that are being made. Come be a part of something really great!"

    It's a cause they'll never give up on, Peavy added.

    "If we can find a cure or even just double the current life expectancy, it will all be worth it. This is our mission now, and as long as I'm breathing, I will continue to work to find a cure for Cystic Fibrosis," she said.

    To sponsor Team Maddie or learn more about other fundraising opportunities, contact Peavy at (601) 938-9441.