Musings of a Marfan Mom

Josh’s Conference Speech


For those of you who haven’t attended a Marfan Foundation conference before, at the closing luncheon there is always the “Living Successfully Panel,” a group of 3-4 people who talk about their experiences with Marfan or a related disorder. There’s usually a teen, an adult, a parent, and sometimes a young adult as well. This year, one of the teens I work with on the teen council, Josh, was asked to speak. I can tell you that I wasn’t the only one moved to tears by his speech…I think those feelings of having to re-arrange dreams are understood by all of us, whether we ourselves have Marfan, or a spouse, or our child. I don’t know of anyone who recorded the actual speech, unfortunately, but Josh was kind enough to share the printed version with me to publish here. I hope you all enjoy it!

Hi my name is Josh and I’m from Florida. I am a psychology major going into my sophomore year in Florida. & I have Marfan syndrome. I have been on the Foundation’s Teen Council for two years.

I was diagnosed in 2000 and, as you can imagine, after diagnosis my life would forever be headed in a new direction. Like any fate changing scenario, things may seem scary at first. It is understandable that change is almost always linked with initial adversity. Though it may be hard to come to terms with something different that presents itself in your life, it is important to remember that change isn’t always necessarily a bad thing. On the contrary, change can be a positive.

After 2000, a series of events unfolded that opened my eyes to who I was, not just as a person & what was going on internally as far as physiology is concerned; but it opened my eyes to who I would have to become.

One of my earliest aspirations was that of achieving the status of fighter. In my younger and more vulnerable years my father introduced me to a film titled “Game of Death” starring a man who would become one of my personal idols, Bruce Lee. Throughout my childhood, I learned that Bruce Lee had pushed the physical boundaries of his body, destroying all limits placed before him and did more with his body than thought possible at the time. Bruce Lee achieved a level of mental and physical efficiency unmatched to this day, reaching his full potential.

As a child, this was my goal. I wanted to push my body to its physical peak, and achieve a level of fitness so devastating I could become a championship boxer. But as you know, things don’t always go as planned, and I was presented with a major life change. Soon after my father had his first descending aortic aneurysm, the doctors examined me and I was diagnosed with Marfan syndrome. I was told no contact sports, or heavy weight lifting, which can get in the way when you are trying to become a world class boxer.

So, in the wake of my diagnosis, my father introduced me to something completely different. He introduced me to a small band from England you might not have heard of called The Beatles. My life would never be the same after that.

When boxing/martial arts was no longer an option I turned to music. I slowly began to realize that there is so much more to life than achieving physical perfection. I grabbed a guitar and I haven’t stop playing since. I’m sure my family can attest to that. What I thought were limits were actually gateways into new and different things I would have never found otherwise.

Awareness of my condition saved my life. I now take the necessary precautions to prevent any further, and possibly fatal, damage. I am proud of who I am now. I’m proud of the people I have met because of the Marfan Foundation. Had I continued down the road to become a fighter, the repercussions would have been fatal.

As a child, I wanted to become a fighter. Who would have known then that a fighter is exactly what I would have to become. I fought for my life in hospital beds when my lungs were collapsing. Twice. I’ve fought the grief of losing close family members, including the father that taught me so much. I’m fighting a battle right now against an aorta that is threatening to tear. But you know something, for all these battles, I know I’ve got the strongest support that anyone could ask for: my family, my friends, all of you here today.

And as far as that aorta, well I’ve got some losartan helping me out. And if the day ever comes that I need to come face to face with that aorta through a surgery, well, I’ll be ready for that fight too.

Bruce lee once said “Be like water making its way through cracks. Do not be assertive, but adjust to the object, and you shall find a way around or through it. If nothing within you stays rigid, outward things will disclose themselves. Empty your mind, be formless. Shapeless, like water. If you put water into a cup, it becomes the cup. You put water into a bottle and it becomes the bottle. You put it in a teapot, it becomes the teapot. Now, water can flow or it can crash. Be water, my friend.”

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  1. What a wonderful message, Josh! You are a terrific role model for our younger Marfs to look up to!


  2. Hermoso y conmovedor. Gracias por compartirlo Maya!


    marfmom Reply:

    Gracias por compartirlo en Facebook!


  3. Mi niño tiene 12 años y también es un guerrero, lo único que lo deprime es la distancia de la familia, pero lo veo feliz con sus amigos, lo operaron en Febrero 29 de su torax y va muy bien.

    Felicidades Josh por ser grande.


    marfmom Reply:

    Me alegro de oír la cirugía de su hijo ha ido bien!


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