Amber Olsen of Ocean Springs said she had never heard of multiple sulfatase deficiency until her almost 3-year-old daughter Willow Cannan was diagnosed with the possibly fatal genetic disorder. MSD is a genetic, ultra-rare lysosomal storage disease that causes the body to deteriorate. There is no known cure for it.
In the three months since Willow was diagnosed, Olsen has become somewhat of an expert and an advocate for children and families suffering with the disorder.
People from around the Coast joined Olsen and Willow on Saturday to walk from Ocean Springs to Biloxi across the Biloxi Bay Bridge.
“We’re trying to raise awareness about MSD and raise some money through donations,” said Warriors for Willow member Jacki Thornburg. “MSD is a super-rare condition and we’re hoping people will learn more about it.”
MSD is so rare that little research has been conducted. Willow’s family and friends are attempting to raise $1 million to help fund research and, they hope, a cure.
Members of the South Mississippi Chapter of Ainsley’s Angels —— a running club that provides wheelchairs for people to participate in events — were on hand to provide “freedom chairs” for Willow and other children with special needs.
“We came out to support Willow and her family,” Ainsley’s Angel Theresa Snell said. “We’ve heard of a lot of disorders, but we had never heard of MSD and there are probably many more out there that we don’t know about.”
Although Olsen and her family are still desperately hoping to raise the money needed for Willow’s research, Olsen said she has been overwhelmed by the community’s support since her daughter's condition was discovered.
“I’m very surprised by how supportive everyone has been,” she said. “We want to bring awareness to MSD and the other storage diseases and there are about 50 of them and there are thousands of kids that die from them and most people don’t know about them until it’s too late and we want them to have the opportunity to be diagnosed early.”
Warriors for Willow is a group dedicated to raising money and generating awareness. Willow’s parents are meeting with doctors and experts around the world and are trying to identify research companies to develop treatment.
For more information, visit www.WarriorsForWillow.com.
Sun Herald Digital Producer Justin Mitchell contributed to this story.