‘Massive’ yard sale Saturday at Summit Academy to benefit teacher with rare ‘stiff-person syndrome’
Proceeds will go toward purchase of wheelchair-accessible van
SALT LAKE CITY — Like most Utah educators, Summit Academy special education teacher Ravien Parsons can’t wait to return to the classroom in August.
To do that, she needs to raise $30,000 to purchase a used, wheelchair-accessible van so she can commute to school and more fully participate in life.
On Saturday, residents of Salt Lake County have an opportunity to help her reach her goal by shopping at what organizers describe as a massive community yard sale fundraiser to be held from from 8 a.m. to 2 p.m. at Summit Academy, 1940 W. 14400 South in Bluffdale.
“I’m hoping that we’ll raise enough money for her to get back and forth. I need her in my school,” said Summit Academy Principal Diana Brantley.
Parsons has taught school for 10 years and started at Summit Academy last year. She works with children with mild and moderate disabilities in grades four through six at the public charter school that serves about 500 students preschool through sixth grade.
“She’s new to our school this year and we are just thrilled to have her. She is a talented, talented educator,” Brantley said.
Earlier this year, Parsons was diagnosed with stiff-person syndrome, a rare rare neurological disorder with features of an autoimmune disease.
The syndrome is characterized by fluctuating muscle rigidity in the body’s trunk and limbs and a heightened sensitivity to stimuli such as noise, touch and emotional distress, which can set off muscle spasms, according to the National Institute of Neurological Disorders and Stroke.
Parsons started the school year strong, but by November, “I started to get really weak.”
She needed to be carried up and down the stairs of her home. For a while, she used a walker and a cane but she frequently fell.
“By Christmas I was not able to walk much at all,” she said. When she returned to school from winter break, she required a power wheelchair.
At first she had a loaner from a power wheelchair company, which she was able to use at work. But it had to stay at her school because her family had no way to transport it to and from home.
After she was diagnosed with stiff-person syndrome in March, her insurance authorized the purchase of a power wheelchair.
“It’s really nice but it’s really heavy,” she said.
Now she needs a van so she can get full use of her chair and to successfully return to the classroom without having to rely on her family for rides to and from school.
Although she has been at the school for just a year, Parsons said she has felt the support of the staff, particularly Brantley, who has a 27-year-old adopted daughter who has physical and cognitive disabilities and uses a wheelchair.
“So, I’ve been blessed with her knowledge and her understanding because the day I showed up with a power chair after Christmas break, she didn’t hesitate to say ‘OK, so how can we make things work for you? What do we need to do in your classroom to rearrange things so that you can turn around?’ I think that’s been amazing because I know that there are situations where employers don’t understand and don’t try to help, and she really has,” Parsons said.
It was Brantley who suggested holding the yard sale at the school. Last weekend, the Parsonses held a yard sale at their home in Utah County but Saturday’s sale portends to be larger and more visible because the school is right off Redwood Road.
“I’m very hopeful and I’m really excited. I hope people bring more items to go into the yard sale. All of our teachers have signed up to run the yard sale and bring some items and have water on hand. We’re just trying to pull together and give anything we can for her,” she said.
Brantley said experiences with her daughter’s disabilities helped her understand the types of accommodations Parsons needed at work.
Her classroom is on the second floor of the school, which is accessible by elevator. Still, it takes practice to learn how to maneuver an electric wheelchair. Early on, she scraped walls and dented the elevator cab because she was unaccustomed to the dimensions of her wheelchair.
“You know good and well that Ravien’s doing everything she possibly can to keep her independence and to not be a burden on anybody. So if she beats up my walls and scratches my elevator, I’m just going to laugh. It’s going to be fine. This is life. This is reality for her and it’s bad enough that she does not need to apologize for denting the walls, crashing into the elevator. I’m happy it’s my walls that are being dented. I’m happy it’s my elevator that’s being scratched. I’m proud that that’s my teacher. I’m glad she’s with me,” she said.
Parsons has other health issues such as Type 1 diabetes and she underwent a gastric bypass to treat gastroparesis, a disease in which the stomach cannot empty itself of food in a normal fashion, which made it significantly more challenging to manage her diabetes.
Then came the diagnosis of stiff-person syndrome, which further complicated her life.
“I’ve learned that I took a lot of things for granted, like my independence. I’ve always been hard-headed. I have a master’s in special education and I’ve pushed myself so hard. Just to be made to stop and not be able to push through and achieve things that I thought were just normal, everyday things, it’s really humbled me to be more, a little more gracious and understanding of other people with challenges because I’ve just always been ‘Put your head down and get it done,’” she said.
With the help of her school community and ongoing support from Help Hope Live, which assists with community-based fundraising for people with unmet medical and related expenses, Parsons hopes she’ll be able to reach her fundraising goal and be able to purchase a van before school starts. Contributions to Help Hope Live are tax deductible.
“I’m excited. Hopefully all this COVID stuff calms down and we can get to go back to class and see our kids,” Parsons said.
“It’s nice to see them face to face and see that they’re OK, too.”