Bergen County Couple Start Family and Harvard
John and I first met as high school students in Bergen County, New
Jersey. We were married in 1990 and moved into our first apartment
together in South Bend, Indiana, excited about our future and eager
to start our new life. John was finishing up law school and we settled
down in Indianapolis. Our first baby, John Jr., was born in December
1995. A Christmas baby! Together, the three of us moved to Boston
as John entered Harvard Business School to pursue an MBA. (He
seemed to go to a lot of schools back then…!).
As John walked on stage to collect his diploma in 1997, he took our
newborn daughter Megan up with him. Our youngest son, Patrick,
completed our family in 1998, while we were living in San Francisco
for a year.
Life changed abruptly in March of 1998 when we were told that
Megan (then 15 months old) and Patrick (then just a few days old),
had a rare and nearly always fatal form of muscuslar dystrophy
called “Pompe Disease.” We had never heard of it and there was
no history in our families as we were “recessive” carriers for
Pompe. Pompe changed our lives forever, but we are blessed in so
many ways. We spend our days like every other family – smiling
and laughing, doing the best we can in good times and in bad.
And more than anything, enjoying time with each other.
John and I have dedicated ourselves to finding newer and better
treatments for Pompe, and while medical research advances every
day, the best we can do is love each and every moment we have
with our family (as you can see in our photo album!).
Please visit the links page to learn more about Pompe Disease and
the United Pompe Foundation, an organization dedicated to
assisting families struggling with the disease.
Meet the Crowleys
Books about the Crowleys