Willow Cannan will celebrate her third birthday next month, and she already has a big personality. She likes to scoot down the slide with help from her 9-year-old sister, Jenna. She enjoys bubbles and being outside, and she’s discovered ketchup. Willow runs into the living room when she hears “Wheel of Fortune” on television.
Most of all, the tot loves to snuggle with her parents before bedtime.
And as she falls asleep with ease, Willow’s parents, Amber Olsen and Tom Cannan, cuddle close, valuing the moments with their youngest daughter. Olsen and Cannan are not sure how much longer they’ll have with her.
“I feel like there’s a huge time clock just ticking in my ear,” Olsen said as tears rolled down her cheek. “I don’t sleep at night. I’m so worried that we’re not going to get it done in time.”
10 The life expectancy of a child diagnosed with multiple sulfatase deficiency
The body is made up of many thousands of cells, which in turn are made of enzymes and proteins. Olsen said one of the jobs of the enzymes is “to take the trash” out of the body.
“Her trash man doesn’t work probably, so the trash is not going out,” Olsen said. “The cells regenerate and they leave garbage behind, and that trash builds up in the cells —which starts to deteriorate the function of the body.”
The matter left inside 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.
Something was not right
Olsen and Cannan became concerned when Willow was not developing as fast as her sisters had.
Whether she lives and she has to have a feeding tube and a breathing tube and can’t walk, you know that’s a path ... or there’s a path of she dies … it’s like we’ve been hit by a hurricane. Everything has kind of stopped in its track.
“She crawled a little slower than other kids. She sat up a little slower. She walked at 18 months and our other girls walked at one year,” Olsen said. At first, doctors said Willow was just taking a little more time than Jenna and 13-year-old Kylee Cannan. Every child is different, doctors told the concerned mom.
But Willow was not talking, either.
“When she turned 1, we expected to start hearing some words,” Olsen said. A year later, doctors removed adenoids in hopes they had found the problem. Three months passed, and still no words from Willow.
An endocrinology test yielded no red flags, so Olsen and Cannan took willow to a neurologist in Ocean Springs. An initial genetic screen showed Willow was a carrier of MSD, so more testing was ordered. Four weeks later, Olsen and Cannan got the call, confirming that Willow did have MSD.
“In between that time, we Googled it, and we knew it was not good,” Olsen said through tears.
Olsen said she could find only 50 other known cases of children with MSD in the world, and only 20 of those children are still living. One child died about three weeks ago, Cannan said.
‘There is no treatment’
Olsen and Cannan were ready to hit the ground running — they wanted to know more about the disease and if there was a treatment. They started by visiting a geneticist at Keesler Air Force Base, but the doctor had not ever dealt with MSD. Next, they went to a metabolicial geneticist in Jackson who specialized in lysosomal storage diseases.
21 Number of known cases of MSD around the world
The geneticist had seen only two cases of MSD, and both of those newborns never made it home from the hospital, he told Olsen and Cannan.
“That’s part of the issue — because it’s so ultra rare, nobody’s ever dealt with it or hardly ever seen it, much less developed a treatment for it,” Cannan said.
Before the consultation, Olsen had already been busy on the Internet and found where parents developed patient groups and raised money for clinical trials. Olsen’s voice cracked as she told the Sun Herald the doctor encouraged her to pursue that avenue if she wanted to find treatment for Willow.
“It’s a weird situation because you’re talking to a doctor and he kind of puts it back on you,” Olsen said. “You go to the doctor to get the treatment, but there is no treatment.”
The hardest thing
Willow was diagnosed with MSD on May 9, and the last three months in the Olsen-Cannan household have been a whirlwind.
“Our life, it just forever changed,” Olsen said. “Whether she lives and she has to have a feeding tube and a breathing tube and can’t walk, you know that’s a path ... or there’s a path of she dies … it’s like we’ve been hit by a hurricane. Everything has kind of stopped in its tracks.”
“The whole thing of finding out something is wrong with your child – so wrong, so devastatingly wrong … the whole thing has been really shocking,” Olsen said.
But the hardest thing Olsen and Cannan had to do was tell their other daughters that their baby sister was sick.
Jenna is one of Willow’s role models, Olsen said. Jenna often will dress Willow up and play dolls with her. But it was Kylee who asked the tough question Olsen said no parent ever wants to have to answer.
“My 13-year-old said, ‘Is she going to die?’ I said, ‘She may not live as long as you, but we hope she has a long life’,” Olsen said.
Going global for clinical trial
Olsen and Cannan have not wasted any time or money and have hit the ground running in hopes of finding a cure for Willow and the other children living with MSD.
Immediately after she was diagnosed, an acquaintance on a work trip told Olsen about a family in Nashville who recently lost a child to MSD. That family told her about a man in Ireland whose son has it. Olsen said the man has been working to find a cure or clinical trial for his child. He’s raised $500,000 so far, and Olsen and Cannan want to raise $1 million to help the cause and get Willow in a potential trial as well.
“We don’t need money for health care. We have health insurance,” Olsen said. “Because there is no treatment, we have to pay somebody to develop the treatment.”
Then, when a potential treatment is produced, Olsen and the other parents have to pay for the actual trial.
It’s a weird situation because you’re talking to a doctor and he kind of puts it back on you. You go to the doctor to get the treatment, but there is no treatment.
So far, Olsen and the Irishman have found two researchers in the world who specialize in MSD. One is in Italy and one is in the United Kingdom. Olsen said she and Cannan when to Cambridge recently and met with the father from Ireland to talk to scientists about a potential treatment.
“Two months ago, I didn’t know anything about clinical trials or FDA,” Olsen said. The research portion will cost about $500,000, and Olsen said the actual trial would cost from $300,000 to $500,000 per child.
For a child with MSD, time is of the essence. Every time a scientist or doctor talks with Olsen, they ask her how Willow is doing to see if she progressing or regressing.
“You’re in a bad situation yourself, even though she’s doing so well. The time is short, it’s hard to get science to catch up,” Olsen said. “Science doesn’t move fast. They (researchers) are talking in months and years. We’re trying to get them to talk in days and weeks.”
How you can help
Olsen and Cannan have produced a video about Willow to show the world what MSD is and what they’re trying to do to save their daughter. They’ve also set up a profile on a donation website in hopes of raising money to find a cure for Willow and for MSD.
Throughout the process, Olsen and Cannan say they hope they find a way to stop the progression of MSD so their child can live past her 10th birthday.
Tom Cannan teared up when he was asked what this experience has taught him.
“If you’re not going to be an advocate for your child, nobody else is,” he said. “ In the field of rare diseases, the parents have to be.”
Warriors for Willow Walk set for Aug. 6
The Warriors for Willow Walk will be Saturday, Aug. 6, from 8 to 10 a.m. on the Biloxi Bay Bridge.
Willow Cannan, daughter of community leaders Amber Olsen and Tom Cannan, has a rare terminal disease called multiple sulfatase deficiency.
MSD is a metabolic lysosomal storage disease and only 21 cases are documented worldwide. There is no treatment or cure and without medical advancements, those with MSD become severely disabled, blind and unable to eat. Life expectancy is under 10 years of age.
No registration is required for the walk, but donations will be accepted and T-shirts will be available.
Warriors for Willow is a community dedicated to raising funds and generating awareness. Willow’s parents are meeting with doctors and experts globally and are trying to identify research companies to develop treatment.