Tuesday, October 19, 2010
Charlee Bisch & SMA Awareness
Charlee Bisch is the daughter of Steve & Meri Lyn Bisch, who live in St. Louis. Steve and I were roommates and Delta Kappa Epsilon fraternity brothers at Vanderbilt and we have remained good friends over the last 20-plus years.
At the end of August, Meri Lyn sent us an e-mail about Charlee participating in the 2011 Miss Missouri Outstanding Teen program. One of the components of the competition requires that the contestants have a platform to promote. Meri Lyn offered several suggestions but Charlee told her that it had to be something special to her and told her that she had selected "SMA Awareness" as her platform. Meri Lyn then shared one of the papers that Charlee had to submit to compete in the preliminary competition:
AWARENESS OF SPINAL MUSCULAR ATROPHY (SMA)
In 2003 my Dad's college fraternity brother was expecting his first child. Nate Russell was born a beautiful and perfectly healthy baby boy. At five months old they noticed delays in his motor stills. They had him examined and tested by several physicians. The result's they received from the testing were something they never imagined. Nate was diagnosed with type 1 SMA. SMA stands for Spinal Muscular Atrophy and is a disease which affects the motor neurons of the spinal cord and the brain stem. Sadly, type 1 is the worst of the three types and most often fatal. Doctors told Nate's parents that he would never live past his first birthday. His first birthday passed, then his second, then third, fourth, fifth, and sixth. Nate wasn't able to celebrate his seventh birthday. Fighting as hard as he could on April 28, 2010, Nate earned his Angel Wings.
I have always loved children and I remember meeting Nate for the first time. In 2006 my family moved from California to St. Louis and while driving our motor home to St. Louis we stopped in Tulsa, Oklahoma to visit with Nate's family. We saw many pictures since Nate was born and followed his blog but had never met him in person. My family entered his room where he was sleeping and immediately I heard the noise from the machines that monitored him. I thought, WOW this is some kid!
My second encounter with Nate was in 2008. It was a wonderful weekend. Four of my Dad's fraternity brother's families met in Tulsa to celebrate Easter with Nate's family. One of the major affects of SMA is that Nate was not able to talk. Instead, he used his gorgeous big blue eyes to talk and sometimes he made a faint sound in his throat. Nate was completely mesmerized as I would read books to him. Nate also loved watching SpongeBob and the younger kids would often watch with him. We all dyed eggs for Easter. We brought the eggs to his room because he wasn't well enough to join us.
The Miss Missouri Outstanding Teen Program will offer me numerous opportunities to promote my platform, "The Awareness of Spinal Muscular Atrophy". I would like to start a 5k walk promoting SMA awareness targeting all age groups. At the walk I plan to have several booths to help educate everyone on the facts of SMA and show everyone that raising awareness can be fun and educational.
Seeing Nate sleeping peacefully assured me that God blessed him with six and one half crazy amazing years of life. It showed me that he was here to make a difference in people's lives and this is why I am now sharing Nate's story. Nate's life made me realize that more people need to understand this disease and know that the children with SMA are no different than us but just packaged a little differently.
I am very happy to report that on Saturday, October 16th, Charlee was named Miss Gateway St. Louis Outstanding Teen 2011 and will be moving on in the competition to become the 2011 Miss Missouri Outstanding Teen. Here is a picture of her winning the crown:
Jen and I are honored that she would select SMA awareness as her platform and will do all that we can to help her educate people.
Charlee, THANK YOU so much for selecting SMA Awareness as your platform and helping us keep Nate's memory alive!!!!
Trey, Jen, Owen & Angel Nate