Our daughter, Lucy Claire, was diagnosed with Cardio-Facio-Cutaneous (CFC) Syndrome, a rare genetic disorder caused by a mutation in the MAP2K1 gene. This gene plays a critical role in the body’s RAS/MAPK signaling pathway, which helps regulate growth, development, and cell function. When this pathway doesn’t work as it should, it can impact nearly every system in the body—especially developmental and neurological development. Because CFC Syndrome is so rare, there is no cure. The only way Lucy Claire can continue to grow, learn, and thrive is through intensive, ongoing medical care and specialized therapies.


Lucy Claire has recently experienced an amazing milestone. Now at 4 years old, we have seen her independently move herself forward using her feet with the help of a gait trainer. Witnessing her determination and joy as she takes these steps fills us with so much hope. We truly believe that one day she will stand tall and learn to walk on her own, so she can run and play with the other children.


She still struggles with many basic developmental milestones. She continues to have primitive reflexes, which makes learning skills like crawling, walking, eating by mouth, and speaking incredibly challenging. Every small step forward requires countless therapy sessions, adaptive medical equipment, and frequent visits with specialists—many of which are not covered by insurance. The funds raised through this campaign will help us cover essential doctor and specialist appointments, physical, occupational, speech, and feeding therapies, medical and adaptive equipment that supports mobility, communication, and daily living, and costs associated with building a ranch-style, accessible home that will allow Lucy Claire to move safely and independently as she grows.


We are doing everything we can as parents, but the financial weight of caring for a child with complex medical needs is overwhelming. Asking for help is not easy, but we know that our daughter’s future depends on continued access to these life-changing resources. Beyond financial support, we are also asking for prayers, positive thoughts, and shared awareness. Rare disorders like CFC Syndrome are often misunderstood or unknown, and raising awareness helps not only Lucy Claire, but other families walking a similar path. If you are able to donate, share, or simply keep our daughter in your thoughts and prayers, please know how deeply grateful we are. Every act of kindness—no matter how small—helps give her the opportunity to reach her full potential and live the fullest life possible. Thank you for standing with our family and for believing in our daughter’s journey.