Every week, I read about about the journey of Kelsey and her family. This week it is my turn.
I am Kelsey’s grandmother, and Saturday night I went to see a movie, American Assassin—a spy thriller at its core but also a story about the limits to which one is pushed as a result of anger over a loved one.
After approximately 15 minutes into the movie I started to cry hysterically. I connected to the movie’s main character in a way that caught me off guard. It finally hit me that, just like the character in the movie, my actions for Kelsey’s Kaleidoscope have been motivated by a combination of love and anger: righteous anger. The difference though, is that my feelings are not fiction. They are reality.
When Kelsey was diagnosed with PAN, I felt a sense of helplessness that I had never experienced. As a mother and grandmother, I usually know what to do to fix things for my family and make them right. This time, I was unsure as to if or how I could possibly help or improve Kelsey’s situation. But there was one thing I knew for sure: I would not sit on the sidelines doing nothing as my granddaughter struggled daily with a debilitating disease. Therefore, I took the initiative to start Kelsey’s Kaleidoscope in an effort to fix the problem by raising money and awareness so that kids like Kelsey, who are afflicted by PAN or other orphan diseases, no longer suffer.
I had always known that I was motivated by unconditional love and an instinct to make things right and better for my children and theirs. But I now understand that I have also been motivated by anger: anger over the unfairness of it all, anger from watching my beloved granddaughter suffer, and anger from the vast unknown.
It has been difficult. Raising money and asking for donations to fight PAN is the most humiliating and humbling task I have ever performed. Indeed, it is righteous anger that gives me the strength and the courage to do it.
In just under two years we have had successful fundraisers, generous donors and many discussions with researchers, doctors and other families who struggle with the same issues. The support and response have been overwhelming.
It is with my most sincere gratitude that I thank all who have supported Kelsey’s Kaleidoscope. We could not do this without you, and we ask for your continued support as we channel our righteous anger to continue our efforts to find a cure.