Page 62 - South Mississippi Living - April, 2019

KIDS multiple sulfatase de ciency
story by Lori Beth Susman photos coutesy of Amber Olsen
BELOW LEFT: WILLOW CANNAN, at age 2, prior to her MSD diagnosis.
BELOW MIDDLE: WILLOW was named Grand Marshal at the Pecan Park Elementary School Mardi Gras Parade.
BELOW RIGHT: MISSISSIPPI FIRST LADY Deborah Bryant visited with Willow and her mom, Amber Olsen, at Willow’s fth birthday party last October.
FACING PAGE: THE OLSEN- CANNAN FAMILY: Kylie, Tom, Willow, Amber and Jenna.
daughter Jenna Cannan. Jenna said she wanted to be an interior designer, but her mom said, “No, you need to be a doctor.” Jenna then said her big sister Kylie Cannan, 16, could be the doctor, but Kylie piped up and said no, she wanted to be a teacher.
Amber Olsen recounted a recent conversation she had with her 12-year-old
Jenna then looked at her mom and said with a commonplace shrug, “Willow can be the doctor.” That was a heartbreaking moment for Olsen, who knows her youngest daughter, Willow, will probably never see that happen.
Willow Cannan, a captivating 5-year- old with blond hair that’s generally tied in a bow and big brown eyes,
has Multiple Sulfatase Deficiency (MSD). In simple terms, this rare genetic disease leaves her body unable to get rid of the natural cellular
waste everyone makes in every day functions. As there is no treatment for MSD, Willow, a student at Pecan Park Elementary School in Ocean Springs, has already gone from running around like a normal toddler, to being unable to sit up, unable to eat and swallow, and the list goes on. The regressive disease causes her to lose skills daily, and the medical determination is that children with this disease die before they are 10.
“We want people to know she’s still
in there, there’s something to save,” said Olsen. “Willow’s still very much there.”
Willow’s father Tom Cannan added, “I often get the timid question, ‘Is she there, does she understand?’ And I say, emphatically, ‘Yes!’ She knows when I put on her shoes she is going to school, and she starts to chat in her own language. She knows that she
is here and she can communicate in her own way, absorbing everything around her.”
Olsen and Cannan received Willow’s diagnosis when she was 3 after noticing her development was not progressing the way it had with their oldest two girls. Not willing to lose their child in this slow, debilitating way, the two started a foundation
to find a cure for MSD — one of the nearly 7,000 identified rare diseases affecting children all over the world. It is also estimated there are 250 new
62 SOUTH MISSISSIPPI Living • April 2019
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Finding
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