Page 41 - South Mississippi Living - October, 2016

The trips to the doctor finally landed them at the office of Ocean Springs pediatric
neurologist Dr. Marcus Lee. After complicated and lengthy genetic testing, Dr. Lee diagnosed Willow with Multiple Sulfatace Deficiency,
a type of metabolic lysomal storage disease. The family was then referred to a specialist at the University of Mississippi Medical Center in Jackson.
“Some lysomal diseases are not so devastating but this is,” said Olsen. She adds that all cells have lysomal enzymes, but Willow’s are deficient and they deplete over time. What’s worse is that Willow has multiple enzyme deficiencies, 15 in all.
Over time, the body deteriorates to the point that children loose their eyesight, cannot walk and cannot swallow. Most children with MSD die before their tenth birthday.
To date, there have been no treatments for Willow’s disease,
but Olsen and Cannan are working
to create one. Just days after her daughter’s diagnosis, Olsen visited with a friend who knew someone else who had the disease. She reached
out to the family and was added to
a closed Facebook group connecting her with other parents worldwide. She began messaging with a father
in Ireland whose son has the same disease. He did extensive research on the disease, found physicians with expertise in the area and has already raised about $700,000.
Together they attended a medical conference in Cambridge, England,
on lysomal diseases to try to get the physicians to begin researching a treatment and ultimately a cure for the disease.
“Our primary goal is to get Willow to participate in a clinical trial,” Olsen said. But first, the research has to be funded and conducted, which could take about three years.
As for Willow, she celebrated her third birthday with a community birthday bash at Ft. Maurepas
in Ocean Springs, complete with princesses and snow cones. She
just began the pre-school inclusion program at Oak Park Elementary School and even rides the bus. Her mother said she is developmentally delayed especially with her speech, but she plays well and loves other children. She has balance issues when
www.warriorsforwillow.com and on Facebook: @warriorsforwillow
Ocean Springs Rotary Club Night Race
she walks and also has extremely dry skin, both due to the disease.
“She just learned how to give a
hug and she loves to slide and play outside,” says Olsen, noting that Willow’s favorite toys include an outdoor water table and indoor kitchen. She especially loves her older sisters.
In just two months, the Cannan family has received $45,000 in donations through fundraising efforts. Other events are planned for fall.
“Everyone has been so supportive,” Olsen said. “There are the most amazing people in this community. People I didn’t know have called me and reached out to us. The Rotary Club has been very helpful and a portion of the proceeds from their annual race will go to Warriors for Willow.”
October 15
Registration begins at 5 p.m. at the Mary C. O’Keefe Center Race begins at 7 p.m.
No online registration
www.oceanspringsrotary.org
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