3 Lessons for Kids With Life-Threatening Diagnoses, From a Teen With Marfan Syndrome

I was diagnosed with Marfan syndrome in the summer of 2014 when I was only 13 years old. The effects of Marfan syndrome can be potentially life-threatening, so the diagnosis was devastating. There’s no way around that for me or for my family. However, I’ve come a long way since the initial shock and want to share my philosophies with others, whether their diagnosis is Marfan syndrome or something else.

 1. Marfan syndrome is not the end of the world! It is only the beginning of something new.

When my cardiologist from Texas Children’s Hospital in Houston gave me the devastating news I could no longer play basketball, the game I loved and wanted to play in high school, college and maybe even in the NBA, I was crushed. However, I began looking for other sports I could play, like golf and tennis. I also chose to be the manager of my homeschool basketball team. As a result of having an open mind and trying something new, I now have a passion for sports that are safe for me to play the rest of my life (golf and tennis), and at the same time I can still be around basketball, the game I love. Instead of playing, I am managing and learning from my coaches, as I now want to pursue a career in coaching.

2. Don’t be alone on your journey with Marfan syndrome.

At the time I was diagnosed, I did not know anyone with this disorder. I felt scared and alone. As a college basketball fan, I knew Isaiah Austin, the former All-American basketball player from Baylor University and honorary NBA draft pick, had been diagnosed with Marfan syndrome two months prior to my diagnosis. So I decided to raise money for Isaiah’s new foundation to meet him and to help raise awareness for Marfan syndrome. That was the best decision I could have ever made. Isaiah and I text each other frequently. He encourages me and I encourage him. He is like a big brother to me. I also attended the Marfan Foundation’s Annual Family Conference in Chicago this past summer. It was there that I made lifelong friends from Georgia, Pennsylvania, Ohio, California, Alaska and Montana.

Closer to home, my doctor has introduced me to many teens my age in Houston who also have Marfan. Recently, six of us got together on a Friday night and hung out at Dave & Buster’s. We are also going to an upcoming Houston Rockets game together and will participate in the Marfan Foundation’s first Houston Walk for Victory to raise money and awareness for Marfan syndrome. I also have a huge support system with my friends at church and my homeschool co-op. My best friend, Jonathan, has been to many doctor’s appointments with me and was at the hospital when I had eye surgery. I also have extended family from the staff at the Marfan Foundation.

3. Don’t make Marfan syndrome or any setback your excuse. Make it your story.

When I was diagnosed with Marfan, I had a choice: I could either make my new life with Marfan syndrome my excuse or my story. So instead of being angry and turning inward with self-pity, I made the decision to encourage others with Marfan syndrome. I am now focused on raising awareness of Marfan syndrome and money for the Marfan Foundation. I am the youth chair for the Houston Walk for Victory. My personal fundraising goal is $25,000 — and together, we hope to raise $100,000 in Houston.

This wasn’t the path I chose, but it has certainly opened the door to my new purpose in life: to raise as much awareness and money as I possibly can and make Marfan syndrome a widely known disorder. By doing so, many lives can be saved because people will know the signs. I also want to encourage and inspire anyone affected by Marfan syndrome or a related disorder or any setback in life. I believe life is too short not to live in victory. Knowing this, I am going to make the very best of it.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.