One in 100 babies is born with CHD. This is a well-known fact within the CHD community, but many are surprised to hear how common it is. This is not a rare disease. This is the most common birth defect. We have made it part of our mission to continue to spread awareness so that more people understand the need for research and better detection and treatment options.

Our interest in research comes from knowing that there could have been more options for Brett. We know that research for CHD is severely underfunded as compared to other childhood illnesses. It will take all of us working together to continue spreading awareness and making progress year after year for better outcomes.

The amount of financial strain on a family with a lifelong diagnosis like CHD can be overwhelming and adds another layer of stress on an already tough situation. We are proud to say that we have never had to turn away a request for support.

While the need for mental health support isn’t limited to families within the CHD community, we know that there is a huge gap in services available to patients and families. This journey is often one of the most stressful situations a family will ever experience. Having the support of someone who understands not only the medical complexities, but also the emotional challenges, is known to be invaluable to families.

Ellen often says that one of her favorite things about Brett is the fact that she had Down syndrome. While receiving the diagnosis was shocking and scary, that extra chromosome was life changing for all those involved. It is our mission to spread awareness and celebrate all the capabilities of our friends in the Down syndrome community.