By Kate Krietor
March 24th was a first for the Arizona SRNA community. We gathered in Phoenix with our families and friends to show support for SRNA by sharing our stories and flexing our fundraising muscles. The energy and support generated by the 110 participants was gratifying to the volunteer organizers and set the stage for an ongoing Arizona SRNA community.
We walked and rolled, we ate and we played, but most importantly, we gained strength by sharing our stories.
The youngest was a bouncy 3-year-old who got TM when she was just one. Maggie walked at 10 ½ months and had to relearn rolling over and crawling. Her Mom wrote, “Her fight and determination and strength were an inspiration to others, even from someone as young as Maggie.” Our photographer tried hard to get shy Maggie to smile and it took balloons, wagons, and that blue sea of walkers to get her racing and laughing with her small friends. Her story was shared via a story sheet with her beaming smile.
Brittani, a high school senior and varsity athlete who juggles school, clubs and a job like many teens, was our keynote speaker. Brittani got TM at 11. She got out of bed one day and landed on the floor unable to walk. Her comments were amazing. Doctors told her she wouldn’t play soccer again, but she was determined, and a year later was back on the field. She was captain of her Varsity team last year. “I’m resilient,” she said. “My Mom reminds me TM takes you two steps forward and one step back.”
Jason, a local TV reporter, knows how to tell a story. Imagine being on your honeymoon in Hawaii, sitting by a pool and slowly realizing you are becoming paralyzed. His wife came to the walk wearing a T-shirt that said, “TM ruined our honeymoon but not our lives.” Jason was able to share a bit of his (and our) story on his stations, Channels 3 and 5.
There were other stories too. Jordan came with his 22 supporters all wearing Team Jordan 24 shirts! His Mom shared his story of playing high school sports when TM upended his life. Jordan is adapting to a wheelchair after having overcome being on a ventilator. He is a fighter.
And then there is our story, the story of five ‘newbie’ event planners. The idea of putting on a walk was born on Oct 22, 2017 at the end of SRNA’s Rare Neuro Immune Disorders Symposium. We were, for the most part, just meeting each other for the first time and inspired to take hope back to Arizona – to create a community, tell our stories and raise awareness! We inspired each other to organize the walk (in just 9 weeks!) and exceed our goals for community building, participation, funds raised and just plain old fun!
Arizona is a big, diverse state. The event was a coming-together facilitated by dedicated volunteers….thank you Gail, Kate, Julie, Barb and Deb, and to the strong support of SRNA staff for their willingness to “seed” the event and for their critical technical support. As a community we are resilient, we defy the odds and we make things happen. See you all next year in Tucson!