Our CC4C supporters help provide critical resources, hope, and community to families navigating the uncharted challenges of rare diseases like Declan's.

Declan is a tender hearted kid who loves fiercely and brings laughter to all who know him.  He was born with an ultra-rare genetic condition called Jansen’s Metaphyseal Chondrodysplasia.  With fewer than 20 people currently living with Jansen’s, he puzzled NICU doctors trying to understand the cause of his breathing difficulties and bone abnormalities.  Declan was diagnosed at only 3 months old thanks to quick connections to a Dallas geneticist specializing in skeletal dysplasia.

Jansen’s is a progressive skeletal dysplasia causing short stature, metabolic dysfunction, and abnormal bone growth.  This leads to gross motor limitations, bone and joint pain, and an overload of calcium filtering through his kidneys. Declan continues to learn how to function independently in a world built for the average height population.  A team at NIH is currently working toward a trial for a potential treatment that would not cure the debilitating disease but could improve his quality of life long term.

You will often find Declan building LEGO vehicles of his own design, playing imagination rescues with his twin sister, or soaring to the sky on a bucket swing.  He loves reading and has a fascination with sharks, saber tooth cats, and other predators.

Every day, our families face uncertainty about their child's health, financial burdens, and isolation.

Every day, new families face an overwhelming diagnosis, unsure of where to turn. 

Your year-end gift ensures families won’t face this journey alone. With your help, we can continue offering life-changing programs, advocacy, and support for Declan's family and many more.

Together, we can make 2025 a year of hope for families who need it most. Please consider a tax-deductible donation today and help us reach our goal of raising $67,000 for CC4C's mission.