09/23/2025
Meet Danny 👋
Danny was born with a rare genetic syndrome called Cardio-Facio-Cutaneous (CFC). However, he didn’t receive this diagnosis until he was two years old and underwent three rounds of genetic testing.
When Danny was born, he spent almost a week in the NICU for rapid breathing, had his first surgery at just 6 weeks old and joined the infant monitor program for his first three months of life. Learning to dress, bathe and change diapers with three leads connected to him was challenging, but his family made it through. As he grew, Danny began missing more developmental milestones and was first diagnosed with Failure to Thrive. He was in and out of the hospital and doctor’s offices most of his early years for multiple illnesses, but at the 6 months mark, his parent’s hearts sank when their pediatrician, Dr. R.W. Mills, urged them to see Pediatric Genetics, Cardiology and GI as soon as possible.
Megan, Danny’s mom says “Dr. Mills, Natalie Decker, RN, and the many pediatric therapists we see regularly have been incredible advocates for our family. Dr. Mills even called right from the office to help schedule our appointments with specialists when wait times were long. He never gave up searching for answers and continued to treat Danny’s symptoms until he was diagnosed with CFC in 2013. When Danny was diagnosed, there were only around 250 cases of CFC worldwide and as of 2025, there are just over 1,000 cases. We were connected with the Help Me Grow program and started pediatric physical and occupational therapy services at Nationwide Children’s Hospital - Toledo Clinical Therapies right away.
Navigating a rare disease is no easy feat, but the community support and access to pediatric specialists has really helped us on this journey. My family lives in a small town 3 hours away and having so many pediatric experts available locally, all able to access the same charts and coordinate care, has been really helpful and is a huge reason why we will always stay in the area. Danny, now 14 years old, is quite stable, and we have been able to reduce many of his appointments down to annual visits.”
