June 15th, 2009, Jefferson Award
presentation in Washington, D.C.
"On a bright spring morning when she
was 7 months old I walked into my daughter’s bedroom
and experienced every mother’s nightmare…
My baby was whimpering, she was covered in
blood from head to toe, her arms, legs, chest, diaper, and
sheets were all saturated in blood. Her hair was matted with
blood, her eyelids were sealed shut with dried blood, even
her mouth was filled with blood. It was a scene from a nightmare
or a horror movie; something straight out of a Stephen King
novel, only this was real…
That was the night I learned what a life threatening
nosebleed looked like.
That was the night I learned the seriousness
of Julia’s recent diagnosis of Glanzmann’s Thrombasthenia,
GT for short….
That was the night I learned that her doctors
knew little more than I did about GT…
That night was a turning point in my life.
I had a choice to make. I could love my daughter, continue
to mother her and let her doctors GUESS at how best to treat
her, OR I could love my daughter, continue to mother her and
become an expert in the disease myself.
GT is a rare bleeding disorder for which
there is currently no cure. At the time that Julia was diagnosed
information, resources, and support for patients & parents
By the time Julia turned 2 years old I had
started the Glanzmann’s Research Foundation. What began
as a personal crusade quickly became much more.
Today, almost 9 years later, I reach around
the world from my office, in my home. The Foundation raises
money to support research. It serves as a clearing house for
critical information used by doctors, patients and family.
I’ve created classroom care plans for
school districts with GT students, consulted with doctors
from all over the world, and located physicians for GT patients
in need of experienced care.
The Foundation also provides emotional support
for the diagnosed and their loved ones.
Any one can call me, any time, any place,
for any child. I am available 24/7.
Today,research funded by the Foundation is
in the beginning stages of human trials. GT has been cured
in the lab. The curative method used to cure GT has also succeeded
in correcting hemophilia, and has repaired red blood cells
in cancer patients damaged by chemotherapy.
It is not a matter of IF there will be a cure.
It’s a matter of WHEN.
I refuse to accept that Julia, and countless
other people across the globe. have to continue to live a
nightmare because of a lack of awareness and money.
It is blood that binds us all together, tears
at our hearts, and blood that changed my life. I know that
I’ve made a difference, for Julia, and everyone else
who suffers with GT.
Today, instead of living a mother’s
nightmare, I’m working and will continue to work tirelessly
to make a dream come true, .for mothers and their children
around the world, until the cure moves out of the research
lab and into our children. Thank you"