Please support Team Makers of the Pace!
“A worried mother does better research than the FBI.”
The first time I read this, I laughed, but then, in 2021, these words became true of me in a new way when our family was very unexpectedly confronted with the realities of congenital heart disease. In July, our 11-year-old son, Max, was diagnosed with a rare congenital heart defect called CCTGA (congenital corrected transposition of the great arteries). Since only about 5,000 to 10,000 people in the United States have this condition, it was a struggle finding information beyond the basic repeated facts on many hospital sites. We had a lot of questions: What exactly is it? Can we do anything about it? What should we do? Who can help us? Where do we connect with others who are going through this? What does this mean for his future?
We embarked on our own research and waded through what information we could find – mostly academic research articles - trying to find something that would help us decide the best course of treatment, especially since data on the discovery of this defect at his age was just about non-existent. Not knowing is terrible.
We were blessed to finally connect with two specialist CCTGA centers, and while we had some questions answered, most of all it helped us understand that there is simply not enough information available yet. There are questions that have no answers at the moment.
So, this year, our family decided to help raise funds for The Children’s Heart Foundation by participating in a Congenital Heart Walk. BUT…we need some generous people who will sponsor our walk and help us reach our event goal.
Why give? Congenital heart defects are the most common birth defect in the nation, impacting ONE in every 110 babies each year. The Children’s Heart Foundation exists to make sure these babies - and everyone impacted by CHDs – like our son - live long and healthy lives. Because of research, today there is greater hope for kids born with, and adults living with, congenital heart defects.
Help us reach our fundraising goal by making a donation today. You can also become a member of our team and join us at the walk! And don't forget to spread the news so we can reach our goal.
Thank you in advance for your support!
If you think this page contains objectionable content, please inform the system administrator.