Frank Rick, One- Of - A - Kind Little Fighter
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When my sister welcomed her third son, Frank Anthony Rick, into the world on February 15, 2026, she and my brother-in-law expected to meet a healthy baby boy. Instead, their lives were forever changed.
Frankie was born with Apert syndrome and an incredibly rare 17p13 gene deletion, making him the only known child in the world with this exact combination of diagnoses. From the moment he was born, he faced challenges that no baby should ever have to endure.
Frankie was born with syndactyly (fused fingers and toes), significant craniofacial abnormalities, a cleft palate, complete right airway obstruction, severe gastrointestinal complications, moderate hearing loss, and a long list of other complex medical conditions.(&no, none of this was caught in utero)
In his first six months of life, Frankie has already undergone multiple major surgeries on his airway, skull, and brain. He has required blood transfusions and spent 146 days in the NICUs at Children's Hospital of Philadelphia (CHOP) and Boston Children's Hospital before finally coming home.
While bringing Frankie home was an incredible milestone, his journey is far from over.
Because of his complex airway and gastro issues, Frankie requires constant supervision. He relies on a G-tube for all of his nutrition but continues to vomit multiple times a day. Due to his cleft palate, every episode puts him at significant risk for aspiration. He also requires oxygen while sleeping because of severe sleep apnea caused by his facial structure. His medical needs require around-the-clock monitoring, specialized equipment, and caregivers who understand his unique condition.
As the only known child with both Apert syndrome and this specific gene deletion, Frankie cannot simply see any doctor. His care involves an extensive team of specialists, frequent hospital visits, daily doctor visits, and ongoing evaluations. He also needs speech therapy, occupational therapy, physical therapy, feeding therapy, and Early Intervention services to give him the very best opportunity to thrive.
Unfortunately, despite the severity and complexity of Frankie’s medical needs, the services and nursing care approved by insurance fall far short of what he requires. Insurance currently covers only six hours of nursing care each day (and even those six hours are not always guaranteed daily) This leaves Christina and Dan responsible for finding and financially compensating private nurses for the remaining eighteen+ hours of Frankie’s daily around-the-clock care. Christina and Dan deal with Frankie’s daily obstacles also while caring for their two other boys.
John has autism and has his own unique needs, yet both he and Tommy have embraced their roles as the most loving and protective big brothers Frankie could ever ask for.
Even with insurance, the costs of Frankie’s care continue to add up. Insurance does not provide enough of many of the supplies Frankie relies on daily, leaving Christina and Dan responsible for covering those additional needs themselves.
If you know my sister and brother-in-law, you know they are the last people in the world who would ever ask for help, in life and especially financially. They have fought tirelessly for Frankie every single day with incredible strength, grace, and unwavering love. They have celebrated every small victory, advocated through every setback, and never stopped believing in their little boy. But no family should have to carry this.
Frankie deserves every opportunity to receive the care he needs.
Most importantly, we ask for your prayers. Frankie is the sweetest, happiest, and most lovable little boy. If you have met him, you know just how true this is. Despite everything he has already gone through, he continues to smile through it all and reminds everyone around him what resilience, joy, and unconditional love truly look like.
Whether you are able to donate, share this page, or simply keep Frankie and our family in your prayers, every act of kindness means more than words can express.
From the bottom of our hearts, thank you for helping us give Frankie every opportunity to live the life he deserves.
If you'd like to follow Frankie's journey, my sister shares honest daily updates about his milestones, setbacks, victories, and the realities of caring for a medically complex child through CaringBridge. I'll include the link below if you'd like to follow along.
Please note: If you wish to financially support Frankie, please donate through this GoFundMe rather than through CaringBridge. Donations made on CaringBridge support the CaringBridge platform and are not sent directly to Frankie and family.
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