* My views here are my own. They are not representative of The Marfan Foundation in any way.

Dear J,

What a time we live in, where Marfan is all over social media – trending twice in one day – due to two famous individuals living with it! However, with such mixed messages as “Isaiah Austin to Play Basketball Again: Is He OK After the Marfan Syndrome Diagnosis?” and “Austin Carlile’s Devastating Message to Fans: ‘I Won’t Get Better’,” it can be hard to know what to think. People are asking what a Marfan diagnosis really means, and how they should live their lives. That’s why I’m writing to you today. There are many lessons that I want you to learn, but one of the most valuable will be how to take care of your body and advocate for yourself.



There is some frustration now, because for two years Isaiah Austin was held as a role model to the youth in our community. He told all of you that yes, Marfan syndrome can make it necessary to adjust your dreams, but you can and will develop new dreams and those new dreams will be amazing. But then seemingly abruptly, he is saying no, he never did leave his dream of playing in the NBA and that basketball is important enough for him to set the risks aside and play anyway. This is not the example I want you to follow.

Right now, the word stable is being used in the media as though it means in remission. This is not the truth, J. Stable for us means that your aorta didn’t grow between echoes. It says nothing about what could happen a day or a year from now. And while doctors may have different ideas about levels of risk, we know that there are some activities that can be universally harmful to us, because of the risk of injury, aortic enlargement, and death.

There has been speculation about the conversation Isaiah had with his doctor. I’d encourage you to reserve your judgement. Such conversations are private. Instead be concerned that the media is calling this the “Marfan Miracle,” and acting as though Isaiah has been told he is cured. We know there is no cure for Marfan.

I have watched person after person die from this disorder, people that I have come to care for and love. That changes you. There is immense gratitude for being part of this community, don’t get me wrong, but there is a heaviness that I live with too. Some people will tell you that restrictions aren’t necessary, that your only limit is your mind. They’ll say that restrictions hold you back. This is not true. I will not parent from a place of fear, but I will parent from a place of caution. To throw caution to the wind is to play with fire, my son. While treatments have improved our life expectancy, Marfan is not a diagnosis to be flippant about.


It is not giving up to live your life within some limits.



My sophomore year of college I took out a notebook and wrote a 5 year plan. Then I wrote another. And another. I had a plan if I went to grad school, and one for if I didn’t. I had a plan for if I married your dad, and one for if I didn’t. I had one that involved kids, and another that didn’t. And when I was finished, I realized that all my plans made me happy. I showed my Type A, slightly control-freak self that there is more than one way to live a good life.



That’s what I want you to take away from this, J. What Isaiah said originally, that is what is true. Marfan will necessitate not participating in some things, like the indoor soccer team you mentioned earlier this week. Some days the pain from this might be intense. You may be mad at your dad and me, and your doctor. As an adult, you’ll be making your own decisions, and deciding what risks to take. I promise you, if you put your safety first, you will find so many options for happiness.



And while many in the community are disappointed now, maybe our fault is in putting all our proverbial eggs in one or two baskets. Role models are important, but we don’t need someone famous for that, nice though it may be. When you go to conference, you only have to look around to see a host of people who have learned and are learning to make new dreams. I pray that you live your life in such a way that someday you will be such an adult for the youth coming up the ranks.



Love,

Your mom