Robby Benson Shares His Life with Bicuspid Aortic Valve Disease

From the first words of the Preface, I felt that I knew Robby Benson, although we have never met.

Is it because he is almost blind

 without his contact lenses?

Is it because a childhood
heart murmur  was not
"innocent" after all?

Is it because a loving young 
couple with a small child

faced life-and-death surgery
 much too soon?

Is it because it hurt so much
 when those chest tubes were pulled?

Is it because no one listened, 

no one believed him
after his second surgery, 

when he could not breathe?

Is it because his chest 

has been opened four times?

Is it because they did not hold his hand, 

did not comfort him, until finally,
there was someone with compassion
during that fourth surgery?

Is it because of the moving description of
a life-long quest for help,
searching for a place of hope,
by someone born 
with a bicuspid aortic valve?

Yes, it is because of all those things and more. 

You see, my husband was born with a bicuspid aortic valve, too. He has had three surgeries. And over the years, through the Bicuspid Aortic Foundation I have met many others. And yes, they are all very special. They are active, vibrant, gifted men, women, and children, with something special in their hearts. Their aortic valve has only two leaflets, and often their aorta is larger than normal, potentially bulging until it becomes an aneurysm. Their family members, with all three aortic leaflets, may be at risk of aneurysms too. Not everyone has the same characteristics, but some things, including the near-blindness, are not uncommon. On the Foundation website page, Bicuspid Aortic Valve, we describe these characteristics under "The Big Picture". 

They can live extraordinary lives,

 making wonderful contributions to our world.

 But they also need help, they need hope.

Here are links to Robby's book:

I'm Not Dead . . . Yet! on iTunes

I'm Not Dead . . . Yet! in paperback.

I'm Not Dead . . . Yet! on Amazon

Thank you, Robby, for opening your heart and sharing your life,

Creating a climate of hope,

Arlys Velebir

President and Chairman

Bicuspid Aortic Foundation