One of a Kind

Jill Wright Is Living Her Best Life

Writer / Renee Larr
Photography Provided

Jill Wright is booked and busy like any other 21-year-old. She spends time with friends, volunteers, acts and works. She is attending college classes at Bellarmine University in the fall. The only difference between Jill and any other young adult is that she has Down syndrome. 

Down syndrome occurs when the body produces an extra copy of chromosome 21. The CDC estimates that about 6,000 babies in the United States are born with Down syndrome each year. Jill’s mother Julie found out about Jill’s diagnosis when she was 20 weeks pregnant. 

“I did a blood test and it came back as likely positive likely for Down syndrome,” Julie says. “I was shocked at the news. At that point in my life I didn’t have much of an understanding of Down syndrome. I called my husband Dan and we met at home. There were some tears because of the unknown. Dan told me he was going to be a baseball or softball coach anyway, so now he would be a Special Olympics coach. We were pretty much OK from there.” 

In utero, Jill was diagnosed with a heart defect called atrioventricular canal defect. Julie was given a 78% chance of miscarrying. Julie and Dan were more worried about the heart defect and potential of losing their child than the Down syndrome diagnosis. 

“We didn’t care about the delays she might have in the future,” Julie says. “We were focused on doing everything we could to help her survive. As the months went by, Jill and I had many tests done. They couldn’t hear her heartbeat on many occasions, so we would get an ultrasound almost every week. The great part about all that craziness was I got pictures of her.”

The couple spent time meeting with doctors and researching Down syndrome. They wanted to provide Jill with the best tools possible after birth. She was born three weeks early on October 8, weighing in at 8 pounds, 2 ounces. Jill’s birth weight was higher than other babies with Down syndrome, which helped Jill’s survival.

At six weeks old, Jill developed a fever and was admitted to the hospital. She was sent home a week later only to suffer from congestive heart failure. The terrifying incident landed the Wright family back at the hospital. Jill’s doctor performed a heart catheterization, taking photos of the inside of her heart. This helped doctors develop a plan to repair her heart. Jill underwent open-heart surgery the following day, which lasted more than six hours.

Jill spent much of her childhood dealing with different medical diagnoses while leading a reasonably normal life. She started therapy at Down Syndrome of Louisville at 19 days old, and group activities at 18 months old. Her family took her to and from therapy and doctor’s appointments for years. All the time spent shuttling Jill around led to a happy, healthy and thriving teenager. 

“I started teaching Jill the basics of American Sign Language when she was around two months old,” Julie says. “As she grew older, Jill expanded her use of ASL.”

Jill has performed the national anthem in ASL at various military and charity events, performed songs in ASL for a Linkin’ Bridge concert at the Brown Theatre, and for J.D. Shelburne benefitting Angels In Disguise. She even teaches ASL to 3- and 4-year-olds at Down Syndrome of Louisville. 

In 2019 Jill started working part time as the assistant to the theater department director at Mercy Academy. She auditioned for a role in the school’s production of “Godspell” and made quite the impression on Amanda Simmons, director of theater. She was cast in “Godspell” and later “Peter Pan.” Simmons loves Jill’s willingness to advocate for herself and take a chance on something new.

“One thing I love about Jill is her positivity,” Simmons says. “When she first started, she would talk to my students about what it means to have Down syndrome and how she wanted to be treated. We had an open discussion and she wasn’t afraid to say anything. She told them she wanted to be treated just like them. I think it was good for my students to see and hear. She also has a great sense of humor. We laugh so much when we’re together. My students love her.” 

She works two days per week organizing, categorizing and logging scripts. Additionally, she works with Mercy Academy students on their monologues, providing feedback. 

The outgoing young adult loves to volunteer for local organizations like Down Syndrome of Louisville, Angels In Disguise, and Butterfly Backpacks, which provides necessities and encouraging notes to women at The Healing Place. 

“I just love helping other people,” Jill says. “It’s important to me to help anyone that needs it, and I have fun when I help them.” 

Her parents describe her as a very caring person who is always going out of her way for other people. It’s important to them that she cares so much for others. Her father Dan knows many people don’t interact much with those with Down syndrome. They want people to see that the diagnosis of Down syndrome doesn’t make Jill or anyone else with the disease any different than anyone else. 

“We don’t call them disabilities,” Julie says. “We call them capabilities. People with Down syndrome are capable of having full lives. They have jobs, relationships, and are active in their communities just like anyone else.”

Jill has modeled for many print advertisements and brochures. She’s played softball, basketball, cheerleading and golf in the Special Olympics with Dan as her proud softball coach. Her involvement in these various endeavors led to Jill being chosen as the Down Syndrome of Louisville 2020 Citizen of the Year. 

“That was exciting for me,” Jill says. “It was an honor to be selected.” 

She’s even met former President Jimmy Carter twice. The first time was at Sam’s Club at a book signing. The second was at his 90th birthday celebration in Plains, Georgia.

Jill has lofty goals for her future. She will participate in the College Connections program at Bellarmine University in the fall. The new program was designed in conjunction with Down Syndrome of Louisville. Jill was quickly selected as one of two students to participate. 

“Jill and another student will be coming to campus twice a week to take up to two classes on campus per semester,” says Abigail Walsh, interim director for continuing education. “In addition, they will participate in social and community building activities while they’re here as well. It’s designed to give them the college experience.”

Jill is currently deciding what she’d like to study, and is interested in many areas of education. 

“I want to take classes in communication so I can keep presenting,” Jill says. “I’m interested in photography, technology, theater and maybe graphic design.”

Jill and her family are incredibly appreciative of Down Syndrome of Louisville for their innovative programming, advocacy and support. 

“We’re just so thankful to them for all the help throughout the years,” Julie says. “We’re so lucky to have such a wonderful resource so close to home for Jill because many other families don’t have something similar in their area.”

For more information on Down Syndrome of Louisville, visit dsoflou.org.