Graeme McDaniel Foundation funds research into congenital heart defects in boy’s memory
Before Graeme McDaniel was born, he was fighting for his life. And even though Graeme died in 2015 at the age of 2, his family continues to fight in his honor. His family founded the Graeme McDaniel Foundation, a Katy-based 501(c)(3) charitable organization whose mission is to fund research into congenital heart defects. Graeme’s Run 5K, the organization’s largest fundraising initiative, takes place Feb. 26 at No Label Brewing Co. at 9 a.m.
Graeme’s mother, Stephanie, shared Graeme’s story and how the organization that keeps his memory alive works to help children with heart defects. To register for Graeme’s Run 5K, visit https://graememcdanielfoundation.org/register
Can you start by telling us the story of Graeme?
Graeme was born on December 22, 2012. We had a great pregnancy – nothing to worry about. And then when I went to my 34 week appointment, they saw he had a lower heart rate.
We went for an ultrasound, which confirmed the lower heart rate, so they did an emergency caesarean. Within minutes we were on the operating table and they delivered Graeme.
They thought he was in distress. But he wasn’t; he had actually had heart block, which was one of his congenital heart defects. They didn’t know – nothing had been detected during my pregnancy before the birth. Once he was born, they did a full workup on him and realized he had multiple congenital heart defects.
He had a double outlet right ventricle, malposed great vessels, VSD, coarctation of the aorta, straddle mitral valve, aortic valve hypoplasia, and complete heart block. We had no idea what a heart defect was at the time. So my husband, Robby, and I quickly became experts in how to take care of our baby.
The doctors immediately took Graeme to the medical center and then we were able to meet him shortly after. He spent the first 44 days in hospital. During this time, he underwent two procedures. One was a chest procedure with a temporary pacemaker implanted and they enlarged the aorta. The second procedure was open-heart, and they put a pulmonary artery ring and her permanent pacemaker in her abdomen.
Then we were able to go home, and my other son Mason was able to meet his brother, and we spent two and a half wonderful years with Graeme. We were preparing for her big procedure; this was called double-switch operation. His heart started to weaken, and that’s when he died.
Graeme’s Run was the first fundraiser you did to honor Graeme. How did it happen?
Some of my friends wanted to get together and find a way to remember him and share him with the community and do some good and his name. So they wanted to do a 5k. And I said, “Yeah, that sounds good.” And then, as they continued planning, I found myself getting more and more involved.
Then the Graeme’s Run formed, and this will be our seventh Graeme’s Run at No Label.
You have now turned Graeme’s Run into a foundation. Can you tell us about that?
We have always funded research nationwide for childhood heart defects research foundations. Last September, we launched the Graeme McDaniel Foundation, which we are very excited about. We will locally fund congenital heart defect research at Texas Children’s Hospitals and other hospitals, and various other projects are planned for this year.
We want this search to stay local. People travel everywhere to get to Houston Medical Center to get their child treated. We also want to support other families like ours. We have been in the hospital; we know how scary and stressful it is. So we wanted to be able to support families who are receiving care in a modest way and let them know that they are not alone.
How much money have you raised in Graeme’s name?
I would say close to a million.
How does it feel, as a parent who has experienced insurmountable loss, to see how much you have been able to do on their behalf?
He gave me a place to put the sadness. I put my energy into something hopeful. It’s not easy for me to talk about him, but this race and this foundation kind of forced me to do it in a very beautiful way. I feel like I have this beautiful story to tell with his name attached to it. I think it’s hard for people to hear about loss in any way, and then when it’s a kid, that makes it even harder.
It gave me so much hope to be able to know that we are making a difference for kids like Graeme and all future Heart Warriors, and that is wonderful.