Children's Hospital Boston cardiologist and geneticist Ronald Lacro, MD, will run this year's Boston Marathon as part of the Miles for Miracles team, on behalf of two of his patients: Yamil Kouri and Henry Floyd. Both boys have Marfan syndrome, a genetic condition that affects their connective tissue, which Lacro manages through the Cardiovascular Genetics Clinic. Below are excerpts from narratives submitted by Lacro and the boys' mothers, Suzanne Kouri and Heather Floyd, on what it means to be connected through Marfan and the marathon.
When our son, Yamil, was born at nearly 10 pounds, my husband and I marveled at the size of his hands, joking that he could palm a basketball and that we were going to call Rick Pitino (the Boston Celtics coach at the time) to scout him before kindergarten.
Over the next 12 months, Yamil developed a bit ahead of the curve, sitting up, crawling and walking early. I was becoming increasingly suspicious of Marfan syndrome. He was quickly becoming taller than his sister, who was 14 months older than him, and I couldn't find shirts with sleeves long enough. I spent many nights on the National Marfan Foundation Web site learning as much as I could until I finally decided it was time to seriously look into it.
A geneticist at another hospital concluded that Yamil didn't have Marfan, but something inside of me wouldn't let it end there. So I decided to keep my appointment with Dr. Lacro at Children's.
Dr. Lacro listened carefully to my concerns, and after a cardiac evaluation, he gently explained that our son had Marfan syndrome. We could've fallen through the cracks if it wasn't for the expertise and experience of Dr. Lacro. Instead, we are a success story.
Yamil has a genuine connection to Dr. Lacro. At 2 years old, he affectionately nicknamed his first cardiac medication, "Lacro medicine." He will be 6 years old in June and is starting to understand that his heart is special and that he cannot play competitive sports or run marathons. But he has asked to stop by Children's to visit and congratulate Dr. Lacro for running the marathon on his and Henry's behalf.
We first met Dr. Lacro in the summer of 1998 when our son, Henry, was 3 years old. We had been referred to him by an ophthalmologist who suspected Henry of having Marfan syndrome. Moments after what would be the first of Henry's many echocardiograms, Dr. Lacro came into the exam room and explained to us that Henry did, in fact, have it. Though eight years have passed since he delivered that overwhelming news, we still remember his calm, compassionate and understanding manner.
Since that day, Dr. Lacro has become a very important person in our lives. He is always quick to answer our phone calls and emails with interest and knowledgeable answers. He is up-to-date on recent studies and information about Marfan syndrome and is confident in the course of Henry's care. It is so evident that he cares about Henry. We were meeting with Dr. Lacro the first time it occurred to Henry that he might need surgery on his heart. Henry directed this question to Dr. Lacro, and though it was difficult to answer, he did so with honesty and tremendous compassion for Henry's obvious fear and concern.
Henry thinks Dr. Lacro is "funny, nice and cares about me." As Henry's parents, we are delighted with their close relationship, as it's important that he trusts Dr. Lacro to give him the best care possible.
To have Dr. Lacro running on Henry and Yamil's behalf is a true testament to his dedication and caring. Whenever Henry sees a runner on the road, he talks about Dr. Lacro and his running the marathon in his name. Henry knows he'll never be able to run a marathon, but having Dr. Lacro do it for him is the next best thing.
Ronald Lacro, MD
I'm excited to run the Boston Marathon this year for Yamil and Henry. Working closely with their moms, I have really gotten to know them and their families. This is the first time that my patient partners will be children with whom I've already made a special connection.
These families have devoted an incredible amount of time and talent toward Marfan causes. Suzanne and Heather are extremely active in the National Marfan Foundation, a support organization for people living with Marfan and the professionals who care for them. Together, we have promoted educational activities, organized fundraisers, supported research efforts, and advocated for expanded clinical services for children and adults with Marfan and related connective tissue disorders.
It definitely helps to know that you're training and running for a specific child, or in this case, two. Yamil and Henry have really helped to motivate my training.
They're excited, too. Maybe now they'll know me as more than the guy who orders their echocardiograms, gives them prescriptions for their medications, and spends a long time talking with their moms and dads. Henry and I have even exchanged emails. At first, he wanted no less than for me to win. He's backed down a bit. He now says it's okay if I take second.
To me, a huge part of clinical medicine is making a connection with a patient and his or her family, then making the journey with them as they deal with their medical condition or illness. I've felt that connection with Yamil and Henry and their families. It's a privilege to have this kind of opportunity, and running the marathon allows me a chance to give back to the hospital and to the families.