Ocean Springs family going global to save 2-year-old Willow Cannan
The 35th Biloxi Seafood Festival kicked off Saturday with skies of blue and plenty of sunshine beaming down on Point Cadet Plaza at the Biloxi Back Bay. There was lots and lots of fried, grilled and boiled seafood, as well as live music, activities for children — and even a 200-foot po-boy.
But for one Ocean Springs family, the Seafood Festival is a serious affair. Warriors for Willow had a booth at the festival, hoping to raise money for medical research for the group’s namesake, 3-year-old Willow Cannan. A few months ago, Willow was diagnosed with multiple sulfatase deficiency, an ultra-rare genetic disease that causes the body to deteriorate. The disease is so rare there is no known cure and research is limited because of a lack of participants in clinical studies.
Willow’s mother, Amber Olsen, and father, Tom Cannan, have devoted their lives to raising money for MDS research. Their goal is $1 million.
At Saturday’s festival, Olsen said the support, thus far, has been encouraging.
“The community has been so supportive so far,” she said. “We’ve raised over $35,000 in just three months, so we’ve done really well, but we’ve got a long way to go.”
To help raise money, the Warriors are selling T-shirts and tickets for a raffle at the Seafood Festival, which concludes Sunday with the judging of the annual gumbo competition. Olsen said the Warriors for Willow will be there until the festival’s end.
The drawing for the raffle will be Sept. 17.
Olsen said her daughter, who was coming to the festival later in the day, is doing well.
“She hasn’t had any major issues and that’s great, so we are just buying time for her until we can find someone to do the research.”
She said they are going to Boston in October in hopes of talking to some doctors about potential treatments.
“It’s frustrating as a parent to want to do something to help your child and there’s nothing available,” Olsen said. “But we aren’t giving up.”
The festival runs through 5 p.m. Sunday.