Hello, family and friends!

Every year on the fourth Saturday of September, the CCHS community comes together for International CCHS Day—a day dedicated to raising awareness, supporting research, and bringing hope to families living with this ultra-rare disorder.

For those who know Ella, you know that she is so much more than her diagnosis. She is a loving, funny, determined little girl who loves to dance, play, and make us laugh. But behind her smile is a condition that most people have never heard of—and one that has changed our family’s life forever.

Ella has Congenital Central Hypoventilation Syndrome (CCHS), a rare disorder of the autonomic nervous system. Her brain does not automatically send the signals her body needs to breathe properly, particularly during sleep. Ella cannot breathe on her own while sleeping and relies on a ventilator to keep her alive.

Imagine a world where your child surprises you by falling asleep with no warning—and instead of simply letting them sleep, you know that without their ventilator and proper monitoring, that sleep could take their life.

That is the reality of CCHS.

And CCHS is about so much more than breathing. Because it affects the autonomic nervous system, it can cause issues with cardiac pauses, body temperature regulation, GI functions, the eyes, and other automatic functions of the body. Some children with CCHS are also at increased risk for neural crest tumors. Living with CCHS means constant vigilance, specialized equipment, medical appointments, and an anxiety that is difficult to explain unless you’ve lived it. Every night, we place our daughter’s life in the hands of a ventilator and the people caring for her. But Ella continues to amaze us. She has shown us strength, resilience, and joy in ways we never could have imagined. And we are incredibly grateful for the CCHS community—the families, doctors, researchers, and advocates who remind us that we are not alone.

There is currently no cure for CCHS. That’s why research matters so much. Our donations help support the CCHS Network’s mission of advancing research, increasing awareness, supporting families, and working toward better treatments and ultimately a cure.

We dream of a future where Ella can fall asleep without fear. A future where a ventilator isn’t what keeps her breathing. A future where families receiving a CCHS diagnosis hear the word “cure.”

So this International CCHS Day, please stand with Ella and our family. Every donation, every share, and every conversation helps. For Ella. For every child living with CCHS. And for a future where every breath comes naturally.

With love, Alicia, Thomas, Colton & Ella.

What is CCHS?

Congenital Central Hypoventilation Syndrome (CCHS) is an ultra-rare, lifelong genetic disorder that affects the autonomic nervous system, including the body's automatic control of breathing. People with CCHS do not breathe adequately on their own, particularly during sleep, and require lifelong ventilator support or other forms of assisted breathing. Because CCHS can cause heart rhythm abnormalities, digestive complications, an increased risk of neuroblastoma, and other serious health concerns, individuals require highly specialized, ongoing medical care. CCHS is a currently an incurable condition with no available drug therapy. But with your help, that could change!

What is the CCHS Network?

The CCHS Network is the leading nonprofit organization dedicated to serving individuals and families affected by CCHS. By advancing research, educating healthcare professionals, advocating for better recognition and expert care, and connecting families around the world, the Network is transforming uncertainty into hope. Strengthened by community and inspired by medical breakthroughs, it champions a future where CCHS is no longer a life-threatening diagnosis.

How will my gift make a difference?

Your generosity has the power to change lives by:

Providing comfort, support, and guidance to parents hearing the diagnosis for the first time
Funding innovative research that accelerates discoveries and advances future treatments
Educating healthcare professionals to improve the recognition, diagnosis, and lifelong care of individuals with CCHS
Bringing families together through conferences, webinars, and online support
Empowering adolescents and adults with CCHS to build lives of independence, purpose, and possibility
Delivering life-sustaining medical equipment to families facing financial hardship
Supporting the CCHS patient registry in partnership with the National Organization for Rare Disorders (NORD), helping drive research and improve understanding of the disease
Strengthening the CCHS Network's infrastructure to ensure the stability, growth, and long-term impact of its mission

Thank you for casting a light on CCHS!

For more information on CCHS, go to www.CCHSnetwork.org.

Ella's CCHS Day Campaign

Help me light the way!