Jason Thomas had never met the Napier family when he decided to run a marathon for them. In 2007, friend and FCA-E teammate Will Gunter convinced Jason to run the Myrtle Beach Marathon to raise money for the family as they struggled to make ends meet financially. As Jason got to know the Napiers, he felt God calling him to do more to support the family and get others involved.
The Napiers’ two children, Nick and Samantha, were diagnosed with Ehlers-Danlos Syndrome as young adults. EDS affects the connective tissues and causes a weakness in the spine that can ultimately damage the organ control centers of the brain. Because Nick and Sami had to undergo rare and sometimes frequent treatment, the Napier family simply couldn’t pay the medical bills that began to pile up.
When Jason and Will ran the marathon for the Napiers, they raised around $600. Though this money certainly helped the family, it was a small fraction of what they were being asked to pay. “When I learned how extensive their bills actually were, I thought that we had to do more,” Jason said. And with that Jason and Will began to plan a 5k dedicated to raising money for the family and spreading awareness of the rare but serious condition.
As a part of planning, Jason and Will had to decide on a name for the race. “It turns out that there is a medical phrase: ‘when you hear hoof beats, don’t look for zebras.’ This is the logic behind ruling out the most obvious diagnosis first. But EDS is very rare.” So the name for the race became Zebras Do Exist.
The first Zebras Do Exist 5k run/walk was held in 2008. News of the race remained fairly local and the event was supported mainly by a local church and family friends. In 2009, Slick and Donna Douglass worked to gain support from FCA-E teammates and make the race and its cause more public. Last year, in addition to aiding the Napiers, funds from the run were used to help the Matthias family whose daughter Mackenzie was also diagnosed with EDS.
Each year around 250 participants showed up and raised a combined amount of around $17,000. Dorman high school—event site for the Zebras run—has allowed Jason to advertise for the race and this year the high school’s medical society has asked to get involved and help raise funds. The 2010 race is set for March 13, and the goal is to have more that 300 people participate. Along with supporting the Napier and Matthias families, Jason decided to donate some of the funds to The Chiari & Syringomyelia Foundation, which Jason described as “an awareness and research group for related problems to EDS.”
Since being diagnosed with EDS, Nick’s health has improved. Originally unable to stand upright for more than a few moments, Nick is now able to remain active four to five hours a day and is taking accelerated classes at USC Upstate. Sami’s nervous system, equilibrium and headache issues remain constant but have gotten better. She is currently a full-time student at Wofford. Mackenzie, who was diagnosed earlier than the Napiers, has experienced great improvements after her neck fusion and is able to attend all her high school classes.
When Jason learned about the Napiers, he could not help but act on his impulse. Soon after, Jason created an event to spread knowledge of a rare condition while tangibly helping their community in the process. If we as followers of Christ could be as active in our communities and in the lives of those around us who are suffering, God’s name and His plan would be exalted, and we would see lives change and improve like we’ve never witnessed before.
“If anyone has material possessions and sees his brother in need but has no pity on him, how can the love of God be in him? Dear children, let us not love with words or tongue but with actions and in truth." 1 John 3:17-18
Thanks to Jason for providing the information for this article
Thu, February 11, 2010
by FCA Endurance