Mom helps organize inaugural fundraiser
By Joyce Reingold
Reilly Gardner, an inquisitive 4-year-old with a headful of springy blond curls, watches as “Black Panther” munches on greens at the Gumbo Limbo Nature Center in Boca Raton. “I want to swim in there,” he says, pointing to the tank where the green sea turtle is convalescing.
Whitney Crowder, the center’s turtle rehabilitation coordinator, is giving Reilly and his good friend Lenox McDowell a behind-the-scenes tour. She explains that Black Panther was found in Fort Pierce, ensnared in fishing line, and brought to Gumbo Limbo to recuperate. The children listen as Crowder teaches them about sea turtles and the ocean that sustains them.
Reilly, too, draws strength from the sea, and from the salt-tinged air. He is one of 30,000 people in the United States living with cystic fibrosis, a progressive genetic disease. For CF patients, inhaling saltwater mist helps break up the thick, sticky mucus that builds up in the lungs, digestive system and other organs, leading to chronic infections, progressive lung damage and other complications.
That’s why Reilly’s parents, Jessie and Chris Gardner, moved to Delray Beach from Charlotte, North Carolina. “The salt air and ocean are great for him, as he drains from his nose and helps get everything out,” Jessie says. “The salt air is so much better for patients with CF.”
Reilly was diagnosed with CF as a newborn. Jessie and Chris soon learned that they both carry a CF gene. According to the Cystic Fibrosis Foundation, more than 17,000 genetic mutations are known to cause CF. Reilly carries Double DeltaF508, the most common, Jessie says.
“This means the medications currently in the drug pipeline will benefit him,” she says.
For example, the family is excited about the possibilities of Trikafta, a drug the U.S. Food and Drug Administration approved in mid-October.
In the meantime, Jessie fights hard to make a healthy life Reilly’s reality. And now she’s broadening the fight, launching a fundraiser for the CFF’s Florida-Palm Beach chapter to help others living with CF, too.
The inaugural 65 Roses Evening on the Ave will take place Nov. 15 at Old School Square in Delray Beach. The cocktails-and-dinner event will begin at 6 p.m. and have an auction that includes pieces created live that evening by artist Justin Vallee.
Jessie Gardner and Heather Marineau are the event’s co-chairs. Reilly is the youth ambassador.
“Clinical research shows great promise for an estimated 93% of people with cystic fibrosis. However, we have work to do to ensure everyone with this disease has a treatment and one day, a cure,” says Lora Hazelwood, executive director of the Palm Beach chapter, which funds research and runs support programs for local patients and their families.
“I think my main point with cystic fibrosis is to educate people about what it is, because when you look at my son, he looks normal,” Jessie says. “It is a disease that hides. It’s a disease that’s progressive. Just because he may look like any other child, he still faces difficulties behind the scenes. It’s just a little bit more hidden.”
At Gumbo Limbo, Reilly is sunny and energetic, looking every bit the surfer dude in a rash guard and board shorts dotted with surfboards and palm trees. He loves the beach — though there’s less time for that now that he’s in school every weekday — and playing with his friends.
But as a child living with CF, he must do a lot more. Jessie says Reilly takes nine medications, one of which retails for $300,000 a year. He drinks protein shakes. And with each meal he takes three enzyme pills to help counter CF’s effect on his pancreas and help him gain weight. Jessie Gardner says the family has good insurance but that dealing with insurance representatives can be a fight when, for example, they don’t want to pay for a medication anymore.
Reilly “does his treatment twice daily,” his mother says. “He is strapped to a vest machine that shakes to get the mucus up. And he does a nebulizer machine for a total of 40 minutes a day” or 80 minutes when he’s sick. “But, he’s still an incredibly strong-willed little boy who loves to have fun, and he can still do everything anyone else does,” Jessie says.
Megan Casabe, a licensed clinical social worker at Palm Beach Children’s Hospital at St. Mary’s Medical Center in West Palm Beach, meets with Reilly and his parents, and about 90 other CF patients and family members, three to four times each year.
“The daily treatment regimen for someone who has CF is very labor intensive and time-consuming,” she says. “But it doesn’t mean that they’re not able to go out and live a life. We have people who work full-time jobs. We have people in college. We have people with professional degrees and professional jobs. We have people who have families. So, it is not something where they have to be secluded to the house and don’t have a life, or don’t have friends. Which is great.”
In the 1950s, the average life expectancy for a child with CF was five years. Today, it is the mid-40s, according to Casabe.
“However, different genetic mutations have different variations of the disease. And so, we even have some patients in our clinic who are in their late 50s and 60s. The research is incredible,” Casabe says.
The latest improvement may come in the form of the drug Trikafta, which Dr. Preston W. Campbell III, president and CEO of the Cystic Fibrosis Foundation, called a “tremendous breakthrough.”
CF is caused when a mis-folded or missing protein, cystic fibrosis transmembrane conductance regulator protein, “forms a malfunctioning channel that prevents salt and water from traveling in and out of cells on many surfaces in the body,” explains a spokesperson at CFF headquarters in Bethesda, Maryland. “The three medicines within Trikafta are designed to help the CFTR protein fold better, move to the cell surface, and maintain an open channel so salt and water can move in and out of the cell.”
Casabe says someone Reilly’s age “has a much better chance at a full, long life than someone else did even just 10 years ago.”
If You Go
What: 65 Roses Evening on the Ave for the Cystic Fibrosis Foundation’s Palm Beach chapter
When: 6 p.m. Nov. 15
Where: Old School Square in Delray Beach
Tickets: $175 and up
Info: 683-9965 or https://events.cff.org/65rosesontheave
Joyce Reingold has a lifelong interest in health and healthy living. Send column ideas to firstname.lastname@example.org.