By Kelly DiMaggio
3 May

Unite to Fight Congenital Heart Disease

Thursday, May 03, 2018

I had the privilege of attending the 2018 DCMARVA Congenital Heart Walk this past Saturday and it was by far the most meaningful walk I've participated in thus far. My husband Mike first got involved in the Congenital Heart Walk even before I did, four years ago. I was out of town the weekend of the walk and Mike, within 72 hours, realized he could get the day off of work and attend the walk for the both of us.

In that short time, he raised more than $3,000, manned the registration table as a volunteer, and walked alone in my honor. This is the type of husband I have. He's incredible. Since the day we first met he has been nothing but the most devoted support system and advocate for me.

That first walk four years ago was one of the impetuses for Mike to become more involved in the CHD community. He went on to quit his budding career with Wegmans Food Groups—a top ten company to work at—to return to school and purse a degree in diagnostic medical sonography, where he is on the cardiac track. In layman's terms, he will be the guy performing all of the echocardiograms and he hopes to go into pediatrics.

I know he will make a profound difference in the lives of his patients and their families. He was first driven to learn as much about the heart as he could so he could expand his understanding and take an active role in my care going forward. Additionally, Mike committed to his own heart healthy lifestyle, implementing a solid exercise routine and losing close to 60 pounds in the past two years. He is an exemplary student, role model, and advocate. After he graduates he hopes to be a more integral part of the heart community as a whole, striving for advocacy, heart-healthy lifestyles and even healthcare reform.

This year's walk was extra monumental as it was the first walk where Mike was walking as a CHD patient himself. As I wrote in my last ACHA Blog post, we found out at the end of December that Mike has had an undiagnosed congenital heart defect for the past 31 years! He has an ASD (atrial septal defect) with redundant tissue and an atrial septal aneurysm. This is the defect often involved when you hear of athletes or other seemingly perfectly healthy individuals going into sudden cardiac arrest.

Luckily, he was able to have his ASDs closed with our cardiology team in January. Mike has always been my rock in my CHD journey and now it was my turn to be his. I wanted to set and exceed my personal fundraising goal in his honor this year, which I am proud to say I did! I raised over $2,000 and proudly wore a sticker on Saturday stating that I was walking in honor of Mike.

In my opinion, one of the greatest aspects of the Congenital Heart Walks is the immense sense of community they foster. The DCMARVA walk, for instance, was on track to have about 600 participants. My cardiologist started a support group for all of her adult congenital patients a few years ago, and the majority of our support group registered and walked on our team. My husband and I were lucky enough to get to captain our walk, and we were rewarded with wonderful success. We had more than 50 people register to walk on the team and raised close to $7,000.

The amount of support Mike received for his first walk was incredibly heartwarming. My entire family, including my mom's oldest friends, came out to support both Mike and I. Our best friends have been at every walk we have attended, and this year they were able to bring their 11-week-old son. Having them there once again and sharing this experience with the newest generation was incredibly special for us both.

The walk was close to an hour drive for most of our attendees and started quite early on a Saturday morning, yet they all came to walk with us without giving it a second thought. Those are the types of people that you really want in your life, and a community walk like this really highlights those special people in your life.

Although for me, my area walk has come and gone, I know there are still many Congenital Heart Walks coming up—click here for the full schedule. I encourage everyone to check and see when and where your area walk is being held and to participate or just volunteer! I promise you’ll really enjoy the event and be amazed at all you can do to help advocate and educate. 






Add yours below.


The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.