“Wow!  You’re so tall, you must play basketball!”

For those readers who were also vertically gifted growing up, you may have experienced similar remarks from new acquaintances, extended family members, random people at the grocery store..

I would usually say thank you and laugh it off.  How I really wanted to respond was something like, “Basketball is my absolute favourite sport to play, I practice shooting hoops all the time, but I can’t play it because it might kill me.”

Yesterday the sports world was reporting that Isaiah Austin, former Baylor center and second round prospect for the upcoming NBA draft has been newly diagnosed with Marfan syndrome.  A standard EKG test of his heart alerted his doctors to an abnormality and a genetic test confirmed the diagnosis.  If drafted, Isaiah would have been the first NBA player to be partially blind due to a detached retina in one eye.  A quick google search of his name reveals a deeply human story of a young man who hid his partial sight for five years for fear of revealing his impairment.  The ESPN video of Isaiah’s journey to the NBA can be viewed here.

In a news report released yesterday, ESPN stated that Isaiah’s mother drove overnight on Friday from Kansas to Dallas in order to tell her son the Marfan syndrome diagnosis in person.  That statement really struck me since in-person delivery is often reserved for the gravest of news.  What a supportive mom to be there in person!

They told me that my arteries in my heart are enlarged and that if I overwork myself and push too hard that my heart could rupture. The draft is four days away, and I had a dream that my name was going to be called.” – Isaiah Austin

Below is a video of the heartbreaking June 22nd ESPN interview with Isaiah Austin the morning after he learned of his diagnosis.

Many in the Marfan syndrome community recognize this very difficult time for Isaiah as a blessing in disguise – another heart and life saved from potentially rupturing on the court. Carolyn Levering, president and CEO of The Marfan Foundation released a statement yesterday after the news broke.

“While it is disappointing for Isaiah that he cannot pursue a career in the NBA, receiving the diagnosis before a fatal episode is truly a gift. With the diagnosis and treatment, he can live a long, productive life.” – Carolyn Levering

I am so glad that he will not become another statistic and am truly humbled by his optimism.

I can feel my reaction starting to change on the occasions that Marfan syndrome makes it into headline news.  Thankfully those headlines are now more often about a confirmed diagnosis or suspected diagnosis instead of losing a life to the symptoms.

My first reaction used to be one of anger upon hearing the condition I have grown up with and live with being described in such a negative light.  As if being diagnosed with Marfan syndrome means your life and your happiness are over.  Hearing the words “career-ending” and “Marfan syndrome” in the same sentence still strikes a chord in me.

I want everyone to know that a life with Marfan syndrome has tremendous value.

However, when I watch Isaiah’s interview, my heart fills with sadness for the loss of his dream and the changes he has ahead of him.  I am reminded of the people who have died because of this syndrome and their loved ones who must go on without them.  I remember my own feelings of anger, loss and loneliness that I have experienced while living with this diagnosis.

I also want to honour the personal strength that these challenges require.

Welcome to the club, Isaiah, and as you so eloquently put it, “it’s not the end; it’s only the beginning.”

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