OCEAN SPRINGS, Miss. (WLOX) - While the wet weather might have washed out this year’s 4th Annual Zebra Run, that doesn’t take away from the hard work to organize the run and the reason behind it all.
The event is put on each year to raise awareness for Multiple Sulfatase Deficiency, an extremely rare but fatal genetic condition that limits the individual’s ability to deal with cellular waste. The disease is aggressive, and often found in kids, but there are less than one hundred known cases worldwide. Ocean Spring’s own Willow Canaan has been fighting the disease for five years now.
“I think back to when we did our first walk when she was two years old, and she could still walk, she could still stand. Unfortunately, her little body has declined to the point where she needs a feeding tube and she struggles, but she is still here and we still have hope,” said Willow’s mother Amber Olsen.
The hope is with events and fundraisers like the Zebra Run drawing awareness that clinical trials could soon begin, and the search for a cure could take a great leap forward.
“This is a global effort, and this foundation is very close to perhaps getting clinical trials started, and any way I can help bring attention to it I am more than happy to do so,” said actor Brian O’Halloran.
The “Clerks” star was tapped to be the emcee for the Zebra Run and has become close friends with the family, all of whom are remaining optimistic.
“When they first told us, they said that she wouldn’t make it to five years old, but here she is seven,” Olsen said. “We hope the next age is ten. We hope she makes it, but her legacy and what all of this represents and that she represents is incredible. So we appreciate South Mississippi and people across the world really coming forward and supporting us.”
The United MSD Foundation is seeing perhaps its largest number of participants yet, even providing a virtual option with COVID-19 still a factor.
“We are very thankful that we are still able to put this event on and add a virtual aspect to involve our supporters across the country. We are very excited that we have over 500 runners in over 46 states participating,” said Marketing Specialist for United MSD Foundation Mary Douglas.
“I would like to shout out our sponsors for making the event possible: Alphacare, Stein LTD, Coastal Pharmacy, Children’s of Mississippi UMCC. This wouldn’t be possible without them,” Olsen said.
Anyone still interested in participating in this year’s Zebra Run can do so virtually by signing up HERE.