On Saturday, September 7th, Jadon’s Hope Foundation entered a float into the Old Settlers Parade here in Olathe Kansas. The parade boasts that it is the largest in Kansas with over 70,000 attendees. We felt it would be a great way to spread awareness for Spinal Muscular Atrophy (SMA). 1 in 40 people carry the gene that causes the #1 genetic killer of kids under 2. If the attendance met the expectations there were statistically 1,750 carriers in the crowd. Most of those carriers have likely never heard of the disease that takes the lives of 90% of those affected before they celebrate their second birthday.
We decided the theme for the float would be based on the phrase that has become our battle cry.
“Life is not about waiting for the storms to pass, it is about learning to dance in the rain.”
With a storm like SMA it would be easy to feel sorry for ourselves, it would be SO much easier to never leave the comforts of our home. With so much equipment it is always nice to have electricity just an extension cord away. It would be easier to let the storm pass us by but we prefer to do things, anything to escape our SMA reality. Anything to simply live life.
As Saturday approached, the forecast temperature continued to rise and by Friday night they predicted a humid 94 degree day. We thought of pulling our 3 honored warriors off the float but then that just would not be “Dancing in the Rain”.
Saturday morning was warm but a breeze as sweet as angel’s breath (SMA angels perhaps) kept everyone cool. We loaded the float with Cody and Hunter Edwards (SMA type2) up front and Jadon aka “The BUG” (SMA type1) positioned (unintentionally) under… the bug.
It was an emotional ride to say the least. Portions of the crowd would cheer when they saw the boys. There were many “Jadon’s Hope BUG RUN” shirts in the crowd and we overheard several people say “Is he on there? Oh there he is. HEY BUG!!”
As if that wasn’t emotional enough I looked behind the float and saw all of Jadon’s friends walking. They were handing out awareness and dancing with their umbrellas. Kids helping kids is such a powerful image.
It was another one of those amazing days where I worry about how it will turn out and then end up being blown away by the power of the situation. Blown away by the power of God working in our lives.
A big giant tremendously HUGE Thank You to everyone involved. Thank You Cody & Hunter for joining us. Thank you to those who helped with assembly, drove the truck and loaned the trailer, helped with materials, walked, spread the word, and cheered. You guys are all so amazing.
We definitely “Danced in the Rain”.
To find out more about SMA visit our website: JadonsHope.org