A real life example of the benefits of research with regard to children and families

An example of research that is beneficial to children and families that has personal relevance involves my neighbor, Rhonda, her daughter Madi, and Rhonda's father Paul. When I first met Rhonda, my son, Blue, was nearly two years old and her daughter, Madi was about one year old. Madi was a tiny, adorable bundle in her stroller. I had my son by the hand, walking to the corner store. We walked the 100 yards to the convenience store together and engaged in introductory small talk the way that new neighbors do. Rhonda had grown up with my husband and our children were about one year apart in age.Rhonda and her mother owned a dance studio. I remember thinking that Madi, judging by her size at the time, would probably grow to be beautiful and petite dancer like her mother. What I did not know at the time, was that Madi had (and still has) severe congenital scoliosis that caused her spine to grow in a "C" shape, restricting her breathing and the function of her organs.

While she was in elementary school, Madi was chosen to participate in the VEPTR (vertical expansion prosthesis titanium rib project). Madi has had 40 surgeries to date. These surgeries allow Madi to grow while minimizing the curvature of her spine. Madi is now a freshman in high school. She dances, acts, sings, excels in school, is a drummer and participates in athletics. The VEPTR (along with her zest for life) has allowed Madi to grow and thrive. This project is the result of a great deal of research and Madi's participation in the project is part of the resesarch process. Research has positively affected Madi, her mother and her grandfather (Madi and her mother are the lights of his life) as evidenced by the improved quality of life for the entire family.

For a comprehensive account of Rhonda, Madi and Paul's journey, please visit Rhonda's blog at
http://www.madimay.blogspot.com/ .