“I wouldn’t worry too much about the rapid heart beat, but you should look at this.” Those words began our adventures with Marfan syndrome. Our son Micah was five when an insightful pediatric cardiologist at the Alaska Native Medical Center in Anchorage identified an already enlarged aorta and suggested he might have Marfan. We had taken him to see the doctor because his heart would sometimes race for no apparent reason. One fortunate trip to this doctor and soon we were neck-deep in research, more medical appointments, and, luckily, our association with The Marfan Foundation.
When I shared that my victory over Marfan and related disorders was "Finding a MarFriend and a MarFamily when we thought we were alone," I was remembering one of the most amazing gifts this community has given my family: my son Ethan meeting Laura.
Twelve years ago I married my husband Mike. Up until I met him, I had never heard of Marfan syndrome. My husband was diagnosed with Marfan syndrome at the age of 9. I came to understand that he had an issue with his heart that he took medication daily for and had echocardiograms to monitor his condition every six months. He was very tall and he had a pectus deformity which had been operated on when he was a child. Being a private person, I quietly read about the disorder and filed it away in the back of my mind, not wanting to talk about it or face the reality of this condition. Within a year of meeting Mike, he had two pectus surgeries. These were very painful but he fought hard and made a full recovery.
I don’t have the greatest memory, so I am not sure when I attended my first conference. I do remember that it was in St. Louis, and I must have enjoyed it because I kept going back. Then, for a number of years, I didn’t go, mostly because of the surgeries I had to have. Indeed, my slight memory issues are probably due as much from the effects of sedation from those surgeries and the necessities of daily pain medication as they are from age (I’ll be 46 the day after this year’s conference ends).
But I digress.
There we were, at The Marfan Foundation’s 2013 Annual Family Conference in Beverly Hills, California, for the first time. Why had we waited ten years to participate? I think back to when my daughter Hadley was diagnosed with Marfan syndrome and am filled with regret. We missed a decade of these annual conferences and opportunities associated with The Marfan Foundation during those first few critical years. Because Hadley has always been so well adjusted and supported by friends and family, I hadn’t seen the need. After all, we were on top of her medical care, regularly visiting the doctors and are fully aware of her treatment options. I just couldn’t see how attending a conference devoted to Marfan syndrome could benefit us. I couldn’t have been more wrong.
In truth we had never even met another person with this syndrome before we attended the conference. Hadley approached it with the same skepticism I felt, but soon discovered there were so many kids her age that could relate to her. She made new friends quickly and they formed a support system. She felt understood by her peers in a way she had never thought possible. I watched her laugh and bond with other remarkable kids so much like her. I, too, made lasting friendships with parents dealing with the same emotions and concerns I have had. We met with renowned doctors who were experts in Marfan syndrome. They generously donated their time, examining hundreds of people living with this condition. It put my mind at ease to know that we were on the right track.