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Dear Friends & Family:
My name is Carson Gallagher and I want to welcome you to my fundraising page! I’m a cheerful, happy, playful 4 ½ year old boy who lives in Ann Arbor, MI with my mom, dad, and kitty-cat Timone.
First, I’ll tell you a bit about myself. In many ways, I am a typical kid. I go to school every day on the school bus, play with my friends in the neighborhood, give my toys a good workout, swing at the playground, watch Elmo and Curious George, and sometimes drive my Mom and Dad nuts! I laugh at funny noises, like squeaky doors...sneezes...ringtones...and especially the cock-a-doodle-doo of a rooster! I love going for rides in my wagon and also on my dad's bike. I am a very special little boy and I have a lot of people who take good care of me.
What makes me so special? Well…besides my charming smile and infectious laugh…I was born with a rare genetic condition called Smith-Lemli-Opitz/RSH Syndrome. I have a lot of health issues and developmental delays but I don’t let that stop me! Thanks to my Mom and Dad, I’m continually in a variety of therapies, including therapeutic horseback riding, physical therapy, occupational therapy, speech therapy, feeding therapy, and music therapy. Yay for me! I am working very hard to learn basic things such as how to walk, communicate, and eat. I have made tremendous strides in many areas since my early days and continue to learn more and more each day.
Why have I started this fundraising page? On October 18, my dad (John) will be running in the Detroit Free Press Marathon. He has been training for several months now and has decided that he wants to run for something other than a good workout. He wants to be On the Go for SLO! Basically, this means that he wants to help raise money for research for all individuals living with this rare condition.
I'm hoping that my friends and family will donate $1 for every mile he runs (26.2 miles)!
What is Smith-Lemli-Opitz/RSH Syndrome? It's a genetic disorder caused by my body's inability to create and process cholesterol correctly. Although most people try desperately to avoid cholesterol in their diets... it actually is a very important thing that our body produces - especially during our early development. Cholesterol is a necessary cell coating nutrient that supports proper brain and organ development. Without it or when the process malfunctions, kids like me are left with a mental impairment, global delays as well as other various medical conditions, many of which are life threatening. 80% of children who are conceived with SLOS will die before they are born. And those born on the severe end of the spectrum will likely die before they turn 1 year old. In fact, I am one of only about 500 children and adults who are living with SLOS in the United States.
In 2007 and 2008, we helped to raise nearly $30,000 for the SLO/RSH Foundation, a non-profit organization dedicated to helping families learn all they can about the disease, find support and help promote research into finding better ways for special kids like me to grow and thrive the best I can. The SLO/RSH Foundation, like most other non-profit charities, is in desperate need of funding. That’s why I’m asking for your help!
Thank you in advance for your support and generosity! I'm so proud of my daddy for running the the marathon and for helping to raise money for research.
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