Maddie
was the third of our five children and born to us on December 4th,
1998. She was a great loving child that had such a unique personality
that was all her own. She was so helpful and organized even at her young
age that she amazed us with her wisdom and kindness. Maddie had such a
strong connection to her family and loved to be with us no matter what
we were doing. When she started kindergarten at Red Cross Elementary
school it was a challenge for both us and her teachers. For months she
refused to go quietly which was certainly out of character for her. But
after almost three months she came to love her wonderful teachers and
discovered that school was something that she excelled at and truly
enjoyed. Quickly she became a "little helper" to her teacher and became
know as "Green light Maddie". The next year when school started she was
right at home as a first grader. She also started tee-ball that year at
the YMCA with me as her coach. We loved playing together and spent many
days in the backyard with bat, ball, and glove in hand. Maddie was
enjoying being a kid and we enjoyed every day with her. But in that same
summer she started to complain with her breathing and we started to
notice slight changes. We took her to doctors and eventually a
specialist for three months that summer. She gradually worsened to the
point that we had to put her on home bound school. Then one morning in
November she woke up feeling very bad and could not catch her breath and
we noticed her fingers were blue. We rushed her to the emergency room
and in a short time they realized something that we had never been led
to believe and that was that our baby was very, very sick. The doctors
talked about things like lung transplants and donor lists for the first
time. We were in shock and confused about how our little girl, normal
and healthy only months before, had become so ill. The decision was made
to fly her to Louisville and things quickly became a blur to us.
Doctors were preparing her for the flight and told us she needed to be
put on a machine to help her breath for the flight. We hugged her and
told her we loved her and would see her in just a little while. I
remember taking her little shoes off and looking at her little face as
we stepped outside her room to let the staff prepare her. There was no
room on the flight for us and that would be the last time we would see
and talk with our baby. Sometime before landing at Kosair hospital she
suffered cardiac arrest and had to be placed on life support. When we
arrived we learned from the doctors the true state of her condition and
became familiar with the term PVOD. (Pulmonary Veno Occlusive Disease).
Her organs systematically began to shut down over the next several hours
and we were told that she would not recover. A parents worst nightmare
was upon us and we were lost in the hours of disbelief, doubt, and
torment as we tried desperately to grasp what was happening to us and
our Maddie. In the early morning hours of November 23rd, 2005 I held my
baby in my arms and sang her into the hands of Jesus as she took her
last breaths. Our lives had changed forever from that moment on and the
people that we used to be died on that day. We have spent the these
years since then trying to make sense of what happened and searching for
answers. We learned about the disease that robbed us of our little
Maddie and discovered that there was not a lot of knowledge and very
limited research on this rare form of vascular disease. We knew then
that we wanted to help the doctors and hospitals to become more educated
about this horrible swift killer. Our hope is to help spare someone
from suffering what we went through and still suffer with to this day.
So through this website and with the help of all who visit and take up
the fight beside us we will never stop pushing for answers and a cure
for this disease. Maddie's legacy will live on in every donation for
research, education, and scholarship that we can make. Our mission is
that her spirit of love, caring and helpfulness will never be lost.