Ocean Springs family fights to save their daughter - WLOX.com - The News for South Mississippi

Ocean Springs family fights to save their daughter

Three-year-old Willow Cannan has a deadly genetic disease; a disease with a life expectancy of fewer than ten years. (Photo source: warriorsforwillow.com) Three-year-old Willow Cannan has a deadly genetic disease; a disease with a life expectancy of fewer than ten years. (Photo source: warriorsforwillow.com)

An Ocean Springs family is racing against the clock trying to save their little girl's life. Three-year-old Willow Cannan has a deadly genetic disease; a disease with a life expectancy of fewer than ten years. Her family's only hope, barring a miracle, is an experimental therapy that would cost millions. That's why Willow's parents are trying to get the word out about the rare disease that is slowly taking their daughter's life.

The past year and a half has been extremely difficult for Willow's parents, Amber Olsen and Tom Cannan. Almost too much for any parent to endure, as they watch their daughter's health deteriorate. Amber says it's painful to watch.

"Willow continues to get worse," Amber said. "The waste is building up in her cells so the body is slowly dying."

And it's all happening so fast. When little Willow came into the world the Olsen-Canaan family had no idea there was anything wrong with their youngest daughter.  Willow was the third of three girls, and for the first year, her future looked bright.  

"She was normal weight, she seemed fine as a baby."

But when didn't seem to be reaching milestones - walking and speaking as early as her sisters did - they got concerned. But nothing could have prepared them for the diagnosis.

"It was devastating. When we found out she had it, the world kind of stopped."

Willow was two years old when she was diagnosed with Multiple Sulfatase Deficiency, known as MSD.

"We went to a really good Jackson geneticist thinking he'll be able to tell us what to do next; what drug she could take, what clinical trials were available; and he said there is nothing to do."

But Tom and Amber weren't willing to give up.  And they're still fighting to save their daughter. They have spent countless hours doing research and talking to genetic experts around the world about this devastating disease.

"There's a lot of science on the disease. They know which gene is responsible, so there has been some progress."  

And there is more promising research.  

"There has been work in Italy on a mouse, where they inject the correct gene, and they've had success with some conditions."

But as they discover the possibilities, the disease is taking its toll. Willow is already having difficulty walking and speaking, and it's affecting her brain.

"We don't have much time. We are under the gun here."

Under the gun, because they're trying to raise money for research and get into a clinical trial before it's too late for their daughter.  

"It's so hard.  I cry every day."

And talking about it brings on the tears again.

"When your kid is dying and you're watching it happen.  And the time is dragging on; trying to make things happen in the science world."

Amber says part of the tragedy is that she believes the science is there and doctors are willing to proceed, but it will take time and money.  

Wiping away tears, Amber shares her frustration, "With the money hanging over us it's a lot of pressure.  I feel like I can't do enough in enough time. So it's very difficult."

As they race against the clock to save their daughter's life, they try to make sure Willow stays as healthy and active as possible.  She goes to pre-school for special needs children during the mornings and has physical and behavioral therapy at home in the afternoons.

"We take it day by day."

And through it all, they try to remain optimistic, not only for Willow but for their other two daughters who don't understand why this is happening.

"Our older girls are counting on Mom to figure it out. It seems pretty far-fetched I know, but we'll get it done.  It's just a matter of whether it's done in her time frame."

The family hopes to see gene therapy for MSD in mice by the end of this year, and a small clinical trial early next year.  To learn about upcoming fundraisers or to make a donation toward research and possible treatment, go to the family's website at www.warriorsforwillow.com

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