Monday, April 09, 2007

Thank you to Amy and EVERYONE



Madison and I wish to thank everyone who gave their time and talent and HEART to the benefit for her on Saturday. Special thanks to "Miss Amy" and her mom "Mrs. Amy" (as called by Madi).
As per several requests, the piece I wrote about Madi's background follows:

Madison’s Story
My daughter, Madison Draper arrived a bit earlier than expected in August of 1997. Although small, she wasn’t diagnosed with any actual problems until she was eight months old. Madison’s original diagnosis was severe congenital scoliosis. To put that in perspective, her curvature was a spiral in her little body bending at more than 100 degrees before she was one year old. This was making it impossible for her lungs and other organs to grow correctly.
Madi is in the medical record books as the youngest child to ever have a complete spinal fusion. This was done two days after her first birthday at the Children’s Hospital of Philadelphia, Pennsylvania.
Madi then spent a year in a full body cast. Shortly after its removal, we found out that the procedure did not work on her type of scoliosis.
This left us with a dismal diagnosis: In a wheelchair by age four and a life expectancy of ten years.
Madi’s surgeon, Dr. Dormans, was not giving up. He did major research and got Madi to be considered for The Titanium Rib Project. Just after her second birthday, Madi and I traveled to San Antonio, Texas where she underwent a battery of tests and a period of observation by the project’s originators, Dr. Campbell and Dr. Smith. We returned home and waited anxiously to find out whether or not Madi would be accepted into the program. She was one of two out of sixteen children we had met and bonded with who was taken into the project. To this day, I wonder about the fate of the other fourteen children in her group.
Originally, Madison had her veptr rod implants done in San Antonio. (VEPTR stands for vertical expansion titanium rib). For almost three years, we traveled often and stayed for long periods in Texas. Then, a branch of the project opened in Pittsburgh, Pennsylvania and we were transferred to theirprogram.
Since then, Madi has become a bit of a legend on “10 North” at Children’s Hospital of Pittsburgh. She will undergo surgery twenty-nine on June 28th of this year. She knows most of the nurses and technicians by name and her surgeon, Dr. Deeney, won’t hesitate to tell you she is one of his favorites. They all joke that when she ages out of the project she needs to return and show the other kids how it’s done!
Just this past year, a chance encounter with a Mom during a procedure led me to investigate skin issues that have always plagued Madison. Searching on the Internet, I found the Ichthyosis webiste. Further investigation led me to suspect that Madi actually suffers from a rare genetic skin condition called Conradi-Hunermann syndrome. During Madi’s visit to Pittsburgh in February, my research was proven to be correct when she met with their genetic specialists. At this point, we are investigating the use of hormones and other possibilities to help Madi grow.
Madison is now about half way through her VEPTR surgeries and her prognosis is for a long and happy life. She will never be “tall” but I think she is “bigger” than most children her age.
In so many ways, Madi is a typical nine year old. She excels in school and is very strong willed. She is talented and a dedicated friend. I consider us to be lucky to live in an area where people generally are kind and understanding of what Madi goes through. Still, it is difficult to explain the pain both outside and inside that she has had to endure in her short life. This August, Madi will turn ten. Considering her original diagnosis, this is a celebratioin that will call for one HUGE birthday party!
To learn more about Madi’s condition, I invite you to visit the websites below. I feel lucky that the internet can link us with other families going through similar situations and offer a way for us to help others understand her condition.
www.veptr.com
www.madimay.blogspot.com
www.ichthyosis.com
I want to thank Amy Earle for organizing today’s benefit and extend my gratitude to the studio director’s, dance teachers and the talented dancers who have shared their talents today. Most people just have a job. I am so lucky to have a passion that surrounds me with spirited and wonderful artists. Thank you all very much.