I met Allison in September 1991. She was about three years old and full of life. Every time I’d visit her family, Allison would run and give me a hug at the front door. She was a joy to see every time. Little did I know about her condition and what it required of her parents to raise her. Allison has mosaic Down syndrome. This is a rare form of Down syndrome where a percentage of her cells have the extra chromosome that causes Down syndrome and the remaining cells are unaffected. She graduated this year and I take my hat off for her parents.

Allison’s parents worked as missionaries and lived in South America and obviously had little or no help from a group or organization who could inform them on education, health or the future for their daughter. Back then little was known about mosaic Down syndrome and even today many parents are left in the dark, as their child does not have Down syndrome, but this seemingly rare and mysterious condition.

This is where I come into the picture. Having registered to participate in the Arizona Ironman in April 2007 I felt divinely led to raise money for the International Mosaic Down Syndrome Association. IMDSA is the only organization in the world dedicated to help those touched by mosaic Down syndrome. The vision is big, especially to translate materials in other languages and help with research. We want to bring awareness to the general public in the US as well as the rest of the world about mosaic Down syndrome, so medical and educational professionals will know how to help these great people. And, to let families know that they are not alone in raising their child with mosaic Down syndrome. Everyone I’ve spoken to about this in the last 4 months did not know anything about this condition.