Butterflies for Maddie

The Story of a Princess 

By Donna Morgan, Maddie’s mom

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 Norton Children’s 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 parent’s 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 changed forever in that moment on and the people that we used to be died on that day. We have spent 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.