Meet our Grant Recipients
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Ray
Ray is a 17-year-old living with Spinal Muscular Atrophy Type 1 (SMA), a progressive neuromuscular disease that causes severe muscle weakness. Diagnosed at just five months old at Children’s Hospital of Philadelphia, Ray has faced countless medical challenges with strength, resilience, and an incredible outlook on life. Despite it all, Ray continues to thrive. He…
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Cooper
Cooper Pike was diagnosed with Cystic Fibrosis at just 17 days old through newborn screening.Cooper is now 2.5 years old with daily treatments, a loving supportive system and his unstoppable energy. Cooper is living each day with courage, curiosity, and heart. He loves t-ball, football, running and jumping on his trampoline. Cooper’s Mom advocated for…
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Logan
Logan was diagnosed with CF through prenatal screening. While Logan has been relatively healthy and has been able to keep up with his treatments, being tethered to a vest that’s also very loud was isolating for him. Melissa, Logan’s mom, discovered the Lea Marie Faraone Foundation via a post and knew they needed to give…
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Noah
Nine-year-old Noah is a baseball enthusiast with a lot of energy. He has faced numerous medical hurdles in his young life, including a diagnosis of Cystic Fibrosis at birth and at 3 years of age, Nephrotic Syndrome. Despite these obstacles, Noah’s resilience shines bright and his love for baseball remains undeterred. In December 2023, Noah’s…
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Landon
Landon’s journey with Cystic Fibrosis began at just three weeks old when he was diagnosed during his newborn screening. Despite facing numerous hospitalizations, IV antibiotic treatments, and GI blockages requiring NG tube insertion, Landon’s resilience shines through. Recently diagnosed with Specific Antibody Deficiency, he faces additional challenges as his body lacks protection from vaccines and…
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Emerson
Emerson’s journey with Cystic Fibrosis began at just 10 days old when she was diagnosed during her newborn screening. Her condition was compounded by severe pancreatic insufficiency, leading to difficulties in nutrient absorption. When their insurance denied coverage for the AffloVest, Emerson’s family found support through the Lea Marie Faraone Foundation. The Foundation provides hope…
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Trinity
Trinity’s journey has been marked by challenges, resilience, and unwavering determination. From a young age, she faced pulmonary issues without access to health insurance, relying on herbal remedies administered by her family. During the pandemic, Trinity and her family became homeless, disrupting her education and access to basic necessities. Forced to drop out of school,…
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Micah
Micah, a 3-year-old Johns Hopkins Hospital patient, has a rare form of congenital muscular dystrophy (CMD) due to LAMA2 mutation. Hydrotherapy allows him to exercise muscles he cannot normally use, helping him remain limber, prevent joint contractures, and delay the progression of scoliosis. Micah has not been able to participate in public hydrotherapy since the…
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Laikleigh
Laikleigh’s journey with Cystic Fibrosis began even before her birth when her condition was detected during prenatal screening at 37 weeks. Immediately after her arrival, she was whisked away to the NICU, beginning her battle against CF from the very start. Following her birth, Laikleigh spent 55 days in a hospital in Atlanta, where she…
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