Wilsons work to raise awareness of Williams syndrome

Keely Wilson and her family said May is an important month for them as it is National Williams Syndrome Awareness Month, and they have helped set some fundraisers to help the national association raise awareness, including one this week.

Williams Syndrome, which Wilson was born with, is a largely unknown genetic condition characterized by medical and developmental delays, cardiovascular disease and learning disabilities.

Wilson has gone through a lot of hard times with her health, having already had 22 surgeries, said she and her mother, Dottie Wilson, but she feels happy, they said, as Keely Wilson is in a "good place" right now when it comes to her health. Now Wilson is just enjoying her life, from running her dog treat business, Lady Bug Bites LLC, to participating in the Special Olympics.

Wilson recently received a gold medal in the bowling portion of the Havre Area games and said she is excited to travel to Great Falls to compete in cycling and running at the Special Olympics State games.

Wilson also enjoys going to the Williams Syndrome Association conferences that are held across the nation, where she participates in activities and her parents are able to go to classes to learn more about Williams Syndrome and gather information to pass on to others.

Dottie Wilson said the association is great because Keely can make friends and spend time with other people like herself. For this reason, it is important for her to not only raise awareness for Williams syndrome, but also to raise money to donate to the organization, she said.

"Events are being held to increase community awareness and provide financial support for the Williams Syndrome Association, the nation's largest support organization for those with WS," a press release for the association said.

Many of the larger cities in the United States such as Boston, Chicago, and Philadelphia host walks in the month of May to raise money, and for three years, Havre was one of the cities to host.

From 2014-16 the Wilson family, at Keely's request, organized Williams syndrome awareness walks. The first year they held the walk around 200 people joined and all three walks combined made $20,000 for the association.

The Havre awareness walk even gained the Wilson family a VIP award at the 2014 Williams Syndrome Association conference because of the large turnout.

Last year the family was unable to organize the walk because of the opening of their bakery, The Infinity Bake Shoppe, and this year because of the unpredictable weather.

It is a lot of work to plan a walk, Dottie Wilson said, it needs to have planning started from January, and they just weren't sure how the weather was going to be.

Dottie and Keely Wilson said they both agree, though, that they would definitely like to have another walk next year.

Since they are not able to have a walk this year the Wilson family has found other ways to raise money; there will be fundraisers at Taco John's and Pizza Hut and five percent of all sales this month at Infinity Bake Shoppe, will be donated to the national association.

Keely Wilson said that she would like people in the community to understand about the medical complications, such as heart problems, that people with this syndrome suffer with.

She also said that she hopes if anyone wonders about her or Williams Syndrome that they feel free to come and ask her about it.

"Keely would love to talk to anyone who has questions," her mother said.

Dottie Wilson said she would also like the Havre community to know how much they appreciate the support they have received. She added that they have to travel about 25,000 miles a year to bring Keely to doctors in places such as Seattle, but she wouldn't want to leave Havre even if it means having to travel a lot.

"The support cannot be matched," Wilson said.

The Williams syndrome fundraiser at Taco John's, Crunch for a Cause, will be Thursday from 5 to 7 p.m. All people need to do to participate is to show the Williams syndrome flyer or mention the name of the fundraiser when they place their order and 50 percent of the purchase will go to the organization.

The fundraiser at Pizza Hut will be held all day May 17. When people say they are donating to the fundraiser, Pizza Hut will donate 20 percent of their purchase price.