Jackson County

Ocean Springs 3-year-old with rare disease ‘is not going to give up’

Amber Olsen holds her daughter, Willow Cannan, while at home in Ocean Springs on Friday, July 22, 2016. Willow has an extremely rare genetic disease called multiple sulfatase deficiency. Children with MDS have a life expectancy of 10 years or less.
Amber Olsen holds her daughter, Willow Cannan, while at home in Ocean Springs on Friday, July 22, 2016. Willow has an extremely rare genetic disease called multiple sulfatase deficiency. Children with MDS have a life expectancy of 10 years or less. amccoy@sunherald.com

Six months ago, Amber Olsen and Tom Cannan of Ocean Springs received news about their daughter that no parent ever wants to hear.

And since that day, they’ve become advocates for 3-year-old Willow, as they don’t know how much time they have left with her.

Willow was diagnosed with multiple sulfatase deficiency, an ultra-rare genetic disease that causes the body to deteriorate. There is no known cure for it.

The matter left in the cells of children with MSD builds up in the brain and eventually takes away normal functions of the body. Olsen said children with MSD usually don’t live to see their 10th birthday.

Olsen and Cannan are trying to raise $1 million for research and a potential clinical trial. Because the disease is so rare, medical research is scarce, but Olsen said she wants to change that.

They haven’t stopped since Willow was diagnosed, and they won’t stop in 2017.

Willow Cannan is living with an extremely rare genetic disease called Multiple Sulfatase Deficiency. It's such a rare disease that there is no treatment available for it. Children that are diagnosed with MSD are not expected to live past the age o

Since July, Olsen has been to Philadelphia, Boston, Los Angeles and even Europe to talk with doctors and genetics specialists. She’s asked them to help with MSD research.

“They (doctors) say that we’ve got a long road to go down to try find something,” she said. “It’s possible, but nobody’s been working on this because you’ve got to get everything started. It may or may not be (feasible) in (Willow’s) time frame.”

Olsen has set up booths at festivals along the Coast, including the 2016 Peter Anderson Festival and the Biloxi Seafood Festival, and the community has rallied behind her with emotional and monetary support.

“The community is very supportive, monetarily and with prayers and kind words,” she said. “Even at Christmas time, we had a couple people that were worried, they wanted to help our family with Christmas gifts — they’ve been very kind.”

So far, Olsen and Cannan have raised $60,000 for the trial, but they still need more than $900,000 for it to even be a possibility. They are combining their money with that of a man from Ireland whose child also has MSD. So far, he’s raised about $630,000 as well.

Olsen will go to San Diego for the World Symposium in 2017 to network with doctors from around the world. The symposium, she said, is one of the largest conferences for diseases such as Willow’s, called lysosomal storage diseases.

“I will be asking all of them help us with research,” she said. “It will take a lot of networking and asking for help.

“We’re doing this for the greater good, but we’re hopeful that we can get something done quickly. Somebody has got to do it. Somebody has got to get things going.”

Since the Sun Herald last saw Willow, she’s turned 3, and Olsen said she’s making progress in physical therapy, although she is still not speaking.

Willow is very curious and is always moving, and doctors tell Olsen that is a good thing.

“It’s important because it keeps her mobile and it keeps her going,” she said. “It’s going to keep her well longer.

“She’s very tenacious. She’s not going to give up.”

Olsen said people can keep up with Willow’s progress or find information on how to donate at the Warriors For Willow Facebook page. Olsen has also set up the United MSD Foundation nonprofit organization to fund the research for MSD.

Brian O’Halloran, an actor who starred in the movie “Clerks,” will serve on the board, as well as other MSD parents.

Justin Mitchell: 228-604-0705, @Journalism_J

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