Babies come into the world wrapped in so many hopes and dreams - but many of our CC4C families are quickly forced to shift to new dreams: for healing and a cure. At just 2 months old, CC4C Child Sophia was referred to a cardiologist and geneticist due to her facial features and rapid heart rate. The cardiologist detected an extra valve on Sophia's heart and recommended eventual surgery to plug the valve. Additionally, the genetic test showed a very rare chromosome duplication 1Q21.1, which has no previous medical research or knowledge. For over a decade, Sophia and her family have been on a journey towards healing that has involved multiple cranial surgeries, a new diagnosis Chiari Malformation (involving the cerebellar tonsils at the base of her brain), and a life-threatening spinal meningitis infection. They have celebrated progress with each step, but never made it longer than a 2 year stretch before going back to the hospital for yet another procedure.
Each new procedure and diagnosis brought new doctors. Each one asked Sophia’s mom, Kristy, to re-hash Sophia’s extensive medical history – forcing Kristy to re-live the nightmares they had endured. Over time, 24 doctors would join Team Sophia. Sophia’s experience is not uncommon - CC4C Children see an average of 8-12 physicians in their journeys to healing. Their paths are fraught with tests, procedures, and sometimes lengthy waits and travel to see specialists. There are many, many costs associated that are not covered by insurance. CC4C supports families with financial provisions for medical expenses not covered by insurance.