When Lea Marie Faraone was born in 1990, her parents rejoiced for their healthy, happy baby, who grew into a high-spirited toddler. But at age 3, Lea started to show distress around eating. Her mom and dad, Laura O’Donnell Faraone and Henry Faraone, took her to the doctor and expected their daughter to be diagnosed with a minor digestive issue.
Instead, Lea was diagnosed with cystic fibrosis (CF), a progressive, genetic condition that damages the lungs and digestive systems of those it afflicts. A person with CF can expect frequent infections that grow more serious over time and will ultimately result in a shorter life expectancy.
Lea’s doctors told the Faraones that, at the time of the diagnosis during the early 1990s, the average CF patient could expect to live 18 to 21 years.
Laura remembers being stunned. “It doesn’t run in our family,” Laura says. “We didn’t get any testing because it’s a genetic disease.”
Laura and Henry set a goal for their daughter. They ensured Lea would live her life safely—exposure to germs is a daily concern for families living with CF—but fully, living “as if she didn’t
have the illness.” When Lea’s sister Leeza was born, Leeza wanted to do “chest compressions” along with her sister each day. When Leeza started attending school, she asked her mom why the other kids weren’t doing chest compressions.
Lea grew up and embodied her parents’ dreams for a happy, “typical” childhood and young adulthood. She had her own dreams. After graduating from Mount St. Mary’s University, she applied to nursing school, emulating the individuals who provided care when she needed medical interventions.
Lea loved giving back to the CF community. “She put herself in every research study she could,” says Henry. She also served as a nationwide ambassador for CF groups and spoke with parents of kids with CF, encouraging them to live life to the fullest. Lea formed and managed an online support group called “Salty Cysters,” which continues today.
Even though she had to take protective measures to prevent illness, Lea loved traveling. “She never caught anything traveling,” says Leeza. “She knew which seat to get on the airplane. She’d wear a mask—all before COVID-19.”
All of Lea’s travels, Leeza says, had a theme. “Basically, everything revolved around animals.” She swam with dolphins, snorkeled and communed with owls and horses.
Lea took every opportunity she could—in her job as a nurse and as an advocate—to encourage others with life-altering conditions to “live the best life possible.” Before she died in 2018, Lea told her family she wanted to start a foundation dedicated to giving people with disabilities the best possible quality of life. Her family founded the Lea Marie Faraone Foundation to honor her wish.
To date, the foundation has awarded five children “wings” with its “Fly Me to the Moon” program, according to Laura. The program allows parents to apply for life-changing medical equipment that “gives them the spirit to go on and help others,” Laura says.
The foundation bought a hydrotherapy pool to help a child with muscular dystrophy continue to receive treatments during COVID-19 restrictions and has awarded several AffloVests, portable treatment devices for kids with CF. The vest allows kids to move around during the long, daily treatments. This mobility actually improves the effectiveness of the treatment itself, in addition to allowing kids to carry on with their days “without missing life,” says Laura.
Joey Miller, a 12-year-old student at Severna Park Middle School, is the youngest of Jenny and Fred Miller’s three boys and received one of the foundation’s first grants. Between swimming, lacrosse and basketball, Joey did not have time for CF. His mom, Jenny, says he specifically requested an AffloVest for Christmas.
“I remember his physical therapist saying, ‘What kid wants medical equipment for Christmas?’” Jenny says.
Joey did. He knew an AffloVest would allow him the freedom to jump on his trampoline or play outside with his brothers while receiving treatment.
When Jenny learned about the foundation through Joey’s CF care team at Johns Hopkins Hospital and applied for the grant, she realized she’d met Lea. When the Faraones called Jenny to let her know Joey would receive the AffloVest, Jenny told them about meeting Lea.
Introduced to Lea by Joey’s nurses at Johns Hopkins, Jenny says Lea met her for coffee and gave her hope and advice during the overwhelming time after Joey’s diagnosis. Jenny says Lea’s advice was to not let the diagnosis “define your life.”
Laura and Leeza remember the conversation with Jenny vividly. During their meeting, while Jenny talked about meeting Lea, the lights in the Faraone home inexplicably flickered.
“It was her,” Leeza says. “It was Lea.”
Regardless of the source of the flickering lights, there is no doubt the spirit of Lea lives on.