Born in 2013 in Pascagoula, Willow Cannan was beautiful, curious, playful and full of mischief.
But soon after the little girl entered the world, her mom, Amber Olsen, knew something was very wrong.
Her daughter didn’t talk. She was very small and developmentally delayed. She was beset with frequent ear infections and other health issues.
“Doctors thought she would catch up eventually,” Olsen says, “until she started to regress.”
Then came the awful diagnosis: multiple sulfatase deficiency. Comparing the genetic condition to dementia, Olsen explains that cells in Willow’s body were dying from birth. As the cellular waste accumulated, all her vital systems would begin to fail, causing her body to decline.
So rare was Willow’s disease that her neurologist, Dr. Marcus Lee, had never seen it in another child. Patients typically do not live past age 10.
“It was worse than I could have ever imagined; Dr. Lee called me at work and told me on May 9, 2016,” Olsen recalls somberly. “I was numb, devastated.”
DRAWING ATTENTION TO ZEBRAS
The determined mom refused to accept a grim fate for her daughter and quickly turned her heartbreak into advocacy. Within two months of the diagnosis, she traveled to Europe with Willow to meet with scientists there to formulate a fundraising plan. She and Willow’s father, Tom, started a grassroots campaign to raise awareness of the disease, and in 2016, Olsen established the United MSD Foundation with one objective in mind: finding a cure.
“When we first started fundraising,” Olsen says, “we networked to find people who could make a video. We needed to raise millions of dollars.”
She eventually connected with director Patrick O’ Connor, who was fresh off a film called “The Invisible Patients” — which follows a nurse practitioner who cares for very ill, homebound patients.
Over coffee, Olsen told the filmmaker how a fellow mother had created a foundation and was funding pre-clinical research — even spending over $30,000 on a heard of sheep in New Zealand to use for large-animal testing. O’ Connor was intrigued.
Over the next seven years of Willow’s life, he captured 190 hours’ worth of footage that eventually would become a groundbreaking documentary: “The Zebra and the Bear,” which premiered in January. The film chronicles the fight to save Willow against all odds.
“(O’ Connor) had the very difficult job of making rare-disease drug development, funded by parents and people in South Mississippi, into a story that could be followed,” Olsen says. “Not an easy task, but he has done an amazing job. We are getting rave reviews across the world.”
The zebra in the title, Olsen explains, refers to rare diseases.
“When medical students are in residency, the teachers say to look for horses, not zebras; don’t go down a rabbit hole looking for some one-off disease,” she says. “But these diseases do need to be investigated and diagnosed. Willow is the zebra, and I’m the mama bear fighting for her.”
HOPE AND ACTION
Due largely to Olsen’s tireless efforts, multiple sulfate deficiency was picked for a pilot research program at the National Institutes of Health — meaning that a gene therapy clinical trial could start as soon as this year.
“Gene therapy is a ‘game changer’ — not just a drug to relieve symptoms,” she says. “It can actually stop the profession of the disease if given early enough.”
Tragically, developments didn’t happen in time to spare Willow’s life, and she lost her battle in October of 2024. Her 11th birthday in August of last year was the last thing O’ Connor shot for the film.
While the ending was not a happy one, Willow’s legacy lives on through her mother’s advocacy and dogged pursuit of a breakthrough. As new, transformative technologies are being tested to treat diseases that previously were incurable, the future is looking brighter for children with multiple sulfate deficiency and other rare conditions.
Those wanting to support these efforts can participate in the eighth annual Zebra Run for Rate Disease on March 29. This fundraising and community-building event raises critical funds to further research and provide family support. Local activities kick off at 8 a.m. at Fort Maurepas Park in Ocean Springs, and other participants will join virtually from across the country and beyond.
While Olsen’s work couldn’t save her own Willow, she’s optimistic that it could save other Willows in the future. While the devoted mother lives, her daughter will always have a voice.
“She was an angel,” Olsen says, “and she continues to spread hope.”
WANT TO HELP?
8th annual Zebra Run for Rare Disease
March 29, 8 a.m.
Fort Maurepas, Ocean Springs
The event, hosted by the United MSD Foundation, will feature a one-mile fun run for all ages, as well as a 5K chip-timed run. Participants will also enjoy music, family-friendly activities and complimentary lunch provided by food sponsors. Learn more at curemsd.org/zebra-run.
HOW TO WATCH “THE ZEBRA AND THE BEAR”
The film now is being viewed via private showings, and Olsen says eventually, it will be available on digital platforms. You can request a screening or sign up for announcements at www.thezebraandthebear.com.