Sedro-Woolley family touched by Oak Harbor benefit

Acts of kindness can have a profound effect on people.

Even more so when the acts come from complete strangers.

Taci Belisle made a rare visit to Oak Harbor this week and left with the sort of impression that will keep the community close to her heart.

People from a city she hardly knew threw a benefit for her ailing 3-year-old son Wednesday night at The Loakal Public House.

She walked in to the restaurant with her family to see purple balloons, warm smiles and many well-wishers who were there to show their support any way they could.

“I wanted to cry,” she said.

The “We Believe in Ryder” fundraising event was organized by Oak Harbor’s Brandy Ledesma with the support of restaurant owner Kory Dyer and other local businesses and community members.

Ledesma, perhaps best known for the “Mrs. Claus” character she plays at Pacific Winds Farm off Torpedo Road, had visited Ryder at the family’s home in Sedro-Woolley two days before Christmas after she learned of his rare terminal disease on the television news.

Ryder suffers from Sanfilippo Syndrome, a disease that is largely unknown to most medical practitioners. It is described as “Alzheimer’s for children.”

Children born with the genetic defect are missing an enzyme that is necessary to break down natural cellular waste. Without it, the waste isn’t broken down and it builds up in every cell, especially in the brain, causing severe damage that ultimately robs children of the skills and knowledge they had developed, according to a fact sheet from the Cure Sanfilippo Foundation.

Sanfilippo Syndrome often goes undetected until a child is between 2 and 6. It is commonly misdiagnosed initially as autism.

There is no present cure for the disease and no treatments are available yet.

There is no shortage of hope, however — hope that one day researchers may change the grim prognosis.

One day soon.

“I go on a daily basis from, ‘My God, what are we going to do?’ to ‘We are going to beat this,’” said Brenda Belisle, Ryder’s grandmother who grew up on North Whidbey. “He’s so precious.”

Ledesma’s maternal instincts might’ve led to her outreach.

She empathized with Russell and Taci Belisle, who have three children ages 3 and under, including Ryder’s twin sister Vera. Both of Ryder’s siblings are healthy.

Ledesma has two children of her own and has opened her home to three more kids after her sister-in-law died two years ago.

“We’re a big family,” she said. “I think that’s maybe what hit me.”

When she watched the report on TV and learned that Ryder was fascinated by Christmas lights, Ledesma turned into Mrs. Claus and delivered a Christmas tree full of lights to his home and read him a story.

“Something told me that I was supposed to do something more for this kid,” Ledesma said. “My motto has been ‘believe.’ It’s not like a churchy believe but to believe in each other, believe in community, believe in ourselves. So I got home and told my husband, ‘I wasn’t supposed to just take that kid a tree. Something tells me I’m supposed to do something more. So I reached out to my friends at Pacific Wind and I said, ‘Do you guys think that I’m crazy? I want to do a benefit for this little boy.’”

The support has been heartwarming, Ledesma said.

Oak Harbor businesses donated items for gift baskets that were raffled off. The Whidbey Island Rocks group donated beautifully-painted rocks that were sold at a silent auction.

Sailors from the Naval Operational Support Center on Naval Air Station Whidbey Island helped set up tables and assist Ledesma, a Navy veteran who now works in administration at the NOSC, any way they could.

The goal of the benefit was to help the family with medical costs, travel expenses, or anything they need — all to show that there is a community not far away that cares about what they’re going through.

Children who suffer from Sanfilippo Syndrome often only live until their early teens.

“I’ve got my own little girl now and can’t imagine what the family is going through dealing with this,” Dyer said.

Nearly $3,000 was raised Wednesday night.

The atmosphere was festive with music and cosmic bingo. A local group, the Ukuladies, got onstage and performed their Oak Harbor love song.

“Amazing,” said Sandi Doyle, Ryder’s other grandmother. “People have been so good to Ryder. It’s funny how much love you find from people when something like this happens.”

Emily Ramirez of Oak Harbor came to show her support for the Belisle family. Ramirez’s own daughter, Kayla, who will turn 6 next month, suffers from a similar disease known as Hurler syndrome. Kids with this disorder also lack vital enzymes.

Emily Ramirez said she noticed her daughter becoming more quiet and not talking as much at the age of 2. Extensive tests revealed the diagnosis and Ramirez immediately started her daughter on regular enzyme replacement treatments. Kayla has responded well.

“They told me she wasn’t going to know how to say ‘Mom,’ how to crawl, how to do anything,” Ramirez said.

Kayla acts like a typical kindergartner, running around, playing and making friends, her mom said.

Like Sanfilippo Syndrome, Kayla’s disorder has no known cure. Tests in recent months, however, have shown that the treatments are helping.

Her mom holds on to hope.