Rising Stars: Meet Ellen Boyer of Franklin

Today we’d like to introduce you to Ellen Boyer.

Hi Ellen, please kick things off for us with an introduction to yourself and your story.
The Brett Boyer Foundation was created in loving memory and in honor of our beloved daughter, Sadie Brett. Brett is our first child, diagnosed prenatally with Down syndrome (DS) and a congenital heart defect (CHD). She battled her heart disease (atrioventricular septal defect) for her seven inspiring months of life.

When we received Brett’s diagnosis, we were uneducated about both Down syndrome and CHD, and we were very fearful. As we learned more, we realized the world is in the dark about the underfunding of research necessary to improve the lives of those living with CHD as well as DS, and that CHD is much more common than most are aware.

As soon as Brett was born, we knew that Down syndrome was nothing to be feared, and it quickly became one of our favorite things about her.. We are fortunate to live in a community with a strong and supportive Down syndrome network. We hope that if you receive a diagnosis, you will find the same support, or even start a community of your own. Down syndrome is something we believe should be celebrated. We are truly grateful to be part of “the lucky few.” There was nothing “down” about Brett, that’s for sure. If we could go back to the day of her diagnosis, we would exchange tears for a high-five and a hug, saying, “We’ve hit the lottery!”

Brett’s heart disease diagnosis, however, was more difficult to process. It’s hard to find a positive light when you hear your baby will need open-heart surgery to survive. Thankfully, most cases of atrioventricular septal defect (AVSD) are repairable, with a success rate of 97%. Unfortunately, we were in the 3%. Brett fought so hard, and so did the incredible team at Vanderbilt, who loved her dearly. This is why our mission will always be so close to our hearts.

During Brett’s 100-day hospital stay, we witnessed firsthand the dedication of countless medical professionals—doctors, nurses, nurse practitioners, respiratory therapists, social workers, transplant teams, sonographers, phlebotomists, and many others—fighting to give our girl more options. We believe in these people and their mission. We believe they can revolutionize the field of cardiac surgery, and we will do everything we can to help them fulfill their God-given talents.

Our mission is to fund research that can prevent, treat, and improve the current treatment plans for congenital heart disease. We also aim to support patients and families on their CHD journeys, raise awareness about the battle that the “1 in 100” CHD warriors face, and celebrate Brett’s Down syndrome diagnosis and the DS community.

Can you talk to us a bit about the challenges and lessons you’ve learned along the way. Looking back would you say it’s been easy or smooth in retrospect?
There have been many bumps in the road as executing our mission means reliving our trauma daily. I want things to be easier for kids born with CHD and for their families who love them and walk the journey with them. Every time we see families run out of options, we grieve with them and find more motivation to make things better not just in Brett’s honor, but in theirs too.

Thanks for sharing that. So, maybe next you can tell us a bit more about your work?
I started this nonprofit with my family in honor of our daughter who we lost to congenital heart disease at just 7 months old. We fund CHD research, support families while inpatient, support mental health initiatives for CHD patients, families, and staff, and celebrate Brett’s down syndrome diagnosis.

How do you think about luck?
Being at the right place at the right time to meet heart families where they are feels like more than luck to me.

Contact Info:

• Website: https://thebrettboyerfoundation.org
• Instagram: https://www.instagram.com/brightforbrett/
• Facebook: https://www.facebook.com/brightforbrett