Sometimes what seems like a routine, every-day activity can change a person’s life. In the case of Sybil Kuhn, a real estate agent for Coldwell Banker Kline & Associates, what started out as babysitting inspired her to take on a cause. That cause has grown to become a holiday activity for the community, as well as a fundraiser for a genetic disease with no cure.
In 2002, Sybil began watching a three-month-old, sweet little girl named Kiley, after Kiley’s mother returned to work from maternity leave. As Kiley grew, it was apparent that something was wrong – she was not becoming mobile and her development was not that of other babies her age.
After months of testing, the doctors diagnosed the toddler with Spinal Muscular Atrophy (SMA), a devastating genetic disease where the nerve cells in the spine that control muscle movement do not function properly. As a result, people suffering from SMA have little to no voluntary muscle control. Since the muscles are not being used, they begin to atrophy. SMA affects approximately 1 in 10,000 babies and about 1 in 50 Americans are genetic carriers, according to CuresSMA.org. There are four types of SMA – I, II, III, and IV – and there is no cure. In fact, it is the number one genetic cause of death for infants.
“It was really hard for me,” Sybil says, teary eyed. “I was watching her and she was around the same age as my son. When I started studying what SMA was – I had never heard of it – there was not much known at the time. For me, to have that diagnosis that says you are going to outlive your child…I just couldn’t wrap my brain around that.”
Sybil continued to watch Kiley for a few years. Then, when the family had their son, Sybil stopped watching Kiley, but that little girl’s plight stayed with her. The fact that there was no cure for the terrible disease she endured haunted her. She knew she needed to do something to help. She decided to have a small fundraiser.
“I’ve been making holiday wreaths for years, ever since I purchased my first home,” Sybil says. “My mom showed me how to make them. And I thought, what a great way to have a gathering where we could educate people on what SMA is.”
So in 2005, Sybil spoke to her husband about having a small gathering with just family and friends. “I didn’t know anything about fundraising,” she says. “All I knew was I wanted to make a difference and to educate everyone on what SMA was.”
Her plan provided that people could purchase pre-made wreaths or make their own, and 100 percent of the funds raised would go to finding a cure for SMA.
Since then, Sybil’s small family-and-friends gathering has turned into a large fundraising event, where people from all over this state as well as Oregon and Idaho come to make a wreath and support a great cause. “People come and make something that’s their own creation and hang it on their door,” Sybil says. “It’s not only festive and inviting, but it’s also a reminder of the charitable cause – that you made a difference.”
As a realtor, Sybil has a deep connection to the people in her community – she was born and raised here – and has never felt the need to leave. “I love it here,” she says. This helps her with her job because she knows this region’s history and homes very well. She knows the land. She knows which areas flood and which don’t. In fact, people often come to her to ask about specific properties.
But don’t be surprised if you go to her office in early November and it smells like evergreens. This time of year, she is busy preparing the materials for the wreaths. In the weeks leading up to the event, Sybil can often be found in her rubber boots, running from tree farmer to tree farmer, collecting unwanted boughs that she cuts and stores in her shop.
Sybil is quick to say that you don’t need to be “crafty” to make a wreath and they have volunteers on hand to show those who have never made a wreath how to do it. But if you really don’t want to make a wreath, she still has pre-made wreaths available to purchase. This year, teenagers from the surrounding high schools are volunteering to make the wreaths for community service projects. These wreaths are available for pre-order, either through contacting Sybil or through Eventbrite.com, and can be picked up at the event.
The event is always on the Saturday before Thanksgiving, and it’s a great way for the community to kick off the holiday season.
“It’s become a traditional event for many. People come in carloads to start their holiday season by doing something good,” Sybil says.
Along with wreath making, there will be live music, raffle items, homemade cider, and Starbucks coffee. Parking is free and all wreath supplies are provided, though you are more than welcome to bring your own if you wish. Wreaths are a standard size, but if you own your own hoop, Sybil says you are more than welcome to bring it along and make a larger or smaller wreath.
This year’s Wreaths of Hope is on November 19 from 9:00 a.m. to 6:00 p.m. at 22149 Bucoda Highway 507 SE, Centralia, at the Historic Townsend Barn. The event is also a rare chance to see the inside of the barn, which is not normally open to the public.
She says she often gets asked if “this year is your last year.” Her response? “Not until there’s a cure.”