All through the month of February members of the Marfan and related conditions community are guest posting here. Today, Mandy is sharing her family’s story with us.
On December 15, 2005, I met the man that would later become my husband. At that time, I was a young, naïve, 20 year old girl that fell head over heels for this incredibly funny, charming, and good looking man. It was on our very first date that I learned about Marfan syndrome for the first time. I had never heard of it before and in those moments I didn’t fully grasp the reality of what Marfan syndrome was, that it was really serious, and that it could be life threatening. I also had no idea that it would dramatically change my life.
My husband, Mike, was the life of the party. He knew no stranger, he was incredibly charming, and he could talk to a wall. Everyone that met him had to like him. We hadn’t been dating long when I went to a cardiologist appointment with Mike for the first time. It was there that I fully started to understand what Marfan syndrome was.
Mike went many years undiagnosed because doctors were not knowledgeable and brushed his mom off. He had his first surgery as a young boy for pectus excavatum (where his chest was caved in). When doing the surgery, they found his chest plate moved off to the side. He later was diagnosed with scoliosis and had back surgery when he was 15 years old. He had a series of hooks and screws put in his back. The things he shared about the pain that this surgery caused him are etched in my mind. It was one of the hardest times in his life and that pain continued to linger for the rest of his life.
We got married in 2009. A few months into our marriage Mike started getting winded when doing simple things. By December, simply walking through the grocery store would leave him out of breath and sweating profusely. A trip to the cardiologist found that he would need to have his mitral valve repaired as his heart was working way too hard. Fortunately, his aorta remained stable. In February 2010, 1 month before our 1-year anniversary, he had open heart surgery. It was incredibly scary. He was in the ICU longer than anticipated and he ended up having his first panic attack while there. After several months of a rocky recovery, things eventually stabilized, and it seemed like all was going well.
In 2013, we welcomed our first children into the world: boy/girl twins! We knew that there was a 50-50 chance that either of them could have Marfan syndrome. Our Pediatrician was really diligent in listening to their heartbeat and she never seemed concerned. Unfortunately, at a time when we had 2 babies at home, no one was sleeping, and everyone was tired, Mike started having some weird things going on with his health. On September 30, 2013, I watched the ER doctors unhook my husband from all the machines and I never got to see him breathe again. Marfan syndrome took my husband from me, my 4-month-old children’s father from them, and our life has never been the same since.
Marfan syndrome is a genetic disorder and we knew there was a 50-50 chance that our children could have it from Mike. Well…. we nailed that 50%! My son was diagnosed with Marfan syndrome and my daughter does not have it. Being a mother of a Marfan kiddo has brought a whole new level of appreciation for the pain and suffering and things that my husband experienced, as I now must advocate for my son. Fortunately for us, my son only has one major concern currently and it’s his aorta. His aorta is severely dilated and is being monitored to make sure he doesn’t need surgery.
Through the last 13 years of dealing with Marfan syndrome, if I could give just one piece of advice to other families affected by this disorder it would be to get involved and find connections. I cannot even begin to express the sense of community and support my family has received from the Marfan Foundation since we first showed up to the very first Houston Walk for Victory in 2016. I’ve made friends with other mom’s that GET me. They understand the struggles as a mom of a sick kiddo. Beyond the Houston area, we went to our very first annual conference last year. LIFE. CHANGING. Seriously. Go to conference. I met moms. I met wives. I met widows. I met people angry and grieving like me. I met people that are a force to be reckoned with in the world of spreading awareness like I hope to. Even more than finding that support for me… I found it for my son. The children’s conference and my son being able to connect with other kids his age that are just like him, it makes my heart swell. I can’t help but wonder how much of an impact it would have had on Mike’s life if he had been able to go to conference and make these connections himself.
After losing Mike, I know that anything can happen and life can change at any given minute. We will continue fighting for answers, advanced medication and treatments, and more information on overall quality of life of those affected by Marfan syndrome.
Mandy is a 34 year old mom to almost 7 year old twins, Michael and Madison, and widow to her late husband Mike Shaw. They reside in Spring, TX. She has been actively involved with the Marfan Foundation for the last 5 years since the very first Walk for Victory in Houston. She fund raises by making shirts and custom glitter tumblers. You can find her Marfan Tumblers on her Facebook page.