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

Soon after his birth, Luis’ parents and doctors began to notice differences compared with typically developing children including low-muscle tone and delays in reaching milestones. Despite seeing many specialists and undergoing multiple diagnostic tests that ruled out various conditions, Luis’ doctors couldn’t offer any explanations for his symptoms. After a long-awaited comprehensive genetic test was complete, Luis’ family received results before his third birthday. 

Luis was diagnosed with HADDS, which stands for Hypotonia (low muscle tone), Ataxia (balance issues, lack of muscle control or coordination), and Delayed Development (in gross motor, fine motor and communication) Syndrome. It is a rare neurodevelopmental syndrome caused by a mutation in the EBF3 gene on chromosome 10q26.3. The syndrome was discovered in 2016 by researchers in Houston. 

HADDS is not a progressive disease; in fact most HADDS symptoms improve over time, especially with early intervention support in speech, occupational therapy and physical therapy. Luis and his family have found a great deal of support connecting with the small HADDS community as well as with people in disabled, rare disease, and neurodivergent communities. While there may be very few with a specific genetic or ability difference, there are a lot of us altogether!

Luis delights in zooming around and playing chase using his blue walker, which helps him have independence moving around. Working with his therapists, Luis is making progress in his mobility, fine motor skills as well as speaking and using his speech device and a few ASL signs. He is bravely taking more independent steps at home with the help of his parents and big brother. At his play-based pre-school Luis is building social skills with his peers and making friends. He is learning to tolerate being around animals but still prefers to watch dogs and cats at a distance. Luis loves cool cars, city buses, trash trucks, and anything that goes fast. He recently started noticing ubiquitous utility poles and is curious about these complicated things rising into the sky. He loves tall buildings, reading books, listening to music, helping with baking and gardening and swimming, floating and free, in the neighborhood pool. Luis dreams of driving hot rods and riding a rocket into space.

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 Luis'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.