Hello, family and friends!

Every year on the fourth Saturday of September, we join the global CCHS community in recognizing International CCHS Day. It is a day dedicated to raising awareness, advancing research, and bringing hope to individuals and families affected by this ultra-rare disease.

As many of you know, Bryce and Dylan were diagnosed with Congenital Central Hypoventilation Syndrome (CCHS) a few weeks after they were born. In the blink of an eye, our lives changed forever. We were overwhelmed by fear, uncertainty, and countless questions about what the future would hold for them.

Thankfully, we were not alone for long.

Within days of the twin’s diagnosis, we were introduced to the CCHS Network, a community that quickly became our lifeline. We found families who understood our fears because they had lived them, experts who helped guide the twin’s care, and a community that reminded us there was reason to hope. That support changed the course of our journey, and it continues to make a difference every single day.

International CCHS Day was created to cast a light on this little-known disorder, increase awareness among the public and medical community, support groundbreaking research, and unite families around the world. It is also a chance to honor every individual living with CCHS, every family navigating this journey, and every discovery bringing us closer to a brighter tomorrow.

If I’m being honest, this journey has changed me. Hardened me and challenged my faith, my marriage and my health. The challenges are HARD. The loss of sleep, worry, nurses in our home, the loss of privacy, dependency on someone to show up to work just so the boys can go to school, therapy visits and hearing them sometimes say they wish they didn’t have CCHS or that they could sleep without ventilators like Chase, just sucks the air out of my lungs.

I could go on but this journey has also made me appreciate the smaller things in life. The things most take for granted.

The twins wake up with a smile on their face every day. Watching them crush the goals on their IEP and accomplish things we never thought possible reminds me that the hard days are worth it. Seeing them in a pool celebrating the freedom of being trach free, fills my heart more than I ever knew was possible. They fight to be like everyone else and they are killing it!

We are once again asking you to stand with Bryce, Dylan, our family and the entire CCHS community on September 26th. Every donation, every share, and every conversation helps move us closer to better treatments, and, one day, a cure. Together, we can make every breath count.

With love and gratitude,
Dylan, Bryce and their entire family, The Gordon’s

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.

The Gordon Family CCHS Day Campaign

Help us light the way!