Friendly, compassionate, loving, and gentle. These are the first words that come to mind when I think of my friend Jodie. I met Jodie through a program in college where I met with her on a weekly basis to improve her overall health. Jodie has a condition called Williams syndrome, a rare genetic condition present at birth and characterized by medical problems including, cardiovascular disease and developmental delays. The minute I met Jodie I knew our relationship would be special. She warmed up to me right away, told me I was her best friend 5 minutes after meeting her and would always give me the biggest hug every time I saw her, along with “Heyyyyy girl!”. She was the little social butterfly of the program.
This year marks the second annual Williams syndrome awareness week, May 8-14th. I am so thrilled because more and more people are becoming aware of what this condition is and how to help. There are walks all throughout the country during Williams syndrome awareness week. I will be walking the second weekend and can’t wait to see all the smiling faces out there! If you’d like to participate in a walk near you, online registration is open until 2 weeks prior to the walk date or you can register on-site.
Despite Jodie’s upbeat attitude, she struggled daily with debilitating medical issues. Some days were worse than others but her positive spirit always shined through. Although Jodie lived a happy, fulfilled life it broke my heart to see her in pain. This year will be the first year I participate in the walk. I’ll walk to raise awareness of Williams syndrome, and to raise funding for WSA programs that help the lives of individuals with Williams syndrome and their families.
Find out more about Williams syndrome and how you can help.