Young Woman With Rett Syndrome Starts Business To Send Message Of Belonging

Melody Parker Waterloo-Cedar Falls Courier, Iowa

WWR Article Summary (tl;dr) Kylie Elser lives with a rare genetic neurological disorder that has left her nonverbal and in a wheelchair. Despite those extraordinary challenges, Elser has designed a unique T-shirt line that captures her personal story of strength and creativity.

Cedar Falls

Deep teal is Kylie Elser's favorite color — for now.

It's the color of her new T-shirt emblazoned with silver smiling stars and the words "Shine Bright," the flagship theme of her new online T-shirt business, Kylie's Attire. The message also conveys the need for everyone to feel like they matter and belong.

Kylie shines bright in her own way.

The newly minted entrepreneur, 20, has Rett syndrome. It is a rare genetic neurological disorder that occurs primarily in girls and leads to severe impairments. Her parents, Paul and Carrie, got the diagnosis when Kylie was 18 months old. Their daughter uses a wheelchair and is nonverbal, communicating with her eyes and a computer.

Kylie loves fashion and clothes, said her mom. "Target is her happy place. She loves looking at clothes and feeling their textures. That's how she landed on this business." Kylie also likes glitter, the color purple and elephants — a tiny elephant is tucked into her company logo.

Two designs are currently available at www.kyliesattire.com. One collection features T-shirts printed with the "Shine Bright" artwork, and a second design shows a large pair of eyes and the phrase "Sorry, did I roll my eyes out loud?"

Kylie appreciates the witticism. Her computer uses a camera built into the base that tracks her eye movements. It has pre-programmed words, sayings, questions and comments.

"Kylie hovers over one of the squares for a set amount of time, and then it selects that choice for her, kind of like clicking a mouse," Carrie said. "During the pandemic as we've been stuck inside, her favorite comment has been, 'Can we do something else?'"

Kylie also uses low-tech ways to get her points across, such as facial and body language and blinking her eyes for "yes" and "no."

"One of the challenges of Rett syndrome is the motor apraxia. Kylie knows what she wants her body to do, but execution is difficult. She communicates best when she is relaxed. Any added stress can really slow down her communication."

Julie Cuvelier, a business educator at Cedar Falls High School, has worked with Kylie for about two years, beginning in an entrepreneur course and helping her develop and write a business plan. Steadily, the idea gained momentum. Kylie was able to visit various businesses, including a T-shirt company.

"Comfort was important to Kylie, and we wanted her to feel the fabric. We've been very committed to making this Kylie's business and making sure the choices are hers. She's got a very sassy side," Cuvelier said. Tammy Frahm, Kylie's teacher, said she is proud and happy that Kylie has found her passion. "She's pretty independent-minded. The biggest thing is letting her make all the decisions because it's her business. Everybody wants to make choices in their lives and do something they feel is valuable," she said.

Kylie, a C.F. High School graduate, can continue to take classes and receive support from the school until she is 21.

Launching Kylie's Attire been a true team effort, Carrie said, including Kylie's teachers, support system and family. "We've had to learn about taxes, bookkeeping, packaging and shipping. Kylie's good at visually creating things. Our thought has always been how can we maximize Kylie's participation? She loves quotes and sayings and picks them out, picks the colors and works with a graphic designer who creates options for Kylie to choose."

Kylie said her "quotes are relevant, show a little of my personality and create conversation. My shirts show that even though I have a disability, my only limitation is your attitude."

Joey, her younger brother, loves to draw, and Kylie incorporates Joey's artwork into her T-shirts because "it's smart," she said.

Joey, 17, has autism. "He draws all the time, but we have to snag them quickly before he colors them. Sometimes Kylie will say 'No' to one of his pictures. We take photos of his drawings and send to Kylie's graphics designer who uses them to start her designs," said Carrie.

After Kylie selects her designs, Carrie waits a short while before sending them to the graphics designer. "I want Kylie to look at them again to make sure she's happy with her choices."

Carrie praises Print This owner Destiny Dietrick for her willingness to work with Kylie on graphic designs and printing the company's products. "We are so grateful for everyone who has taken the time to work with us."

Kylie plans to release several more T-shirt designs in the coming months, eventually adding long-sleeved T-shirts and crewneck sweatshirts to her stock. She also sells stickers with her flowery logo and other motifs. Every purchase comes with a thank-you card.

In addition, 10% of the profits from a particular design will go to a nonprofit organization, such as Cedar Valley Angels, a nonprofit that supports children and families experiencing foster care. Future recipients will be Ronald McDonald House in Iowa City, where Kylie's family has stayed in the past, and Inclusion Connection, an organization dedicated to accessibility and acceptance.

"Kylie shows that everyone can find a way to contribute. It takes a little more time for us, but it's worth the effort," Carrie said. "Kylie has a voice, and our family is embracing her potential." ___ Distributed by Tribune Content Agency, LLC.

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