Paving the Way: Kira's marching band dreams come true

 

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Kira Mevis has been paving her own way since she was a toddler. At the age of two, Kira was diagnosed with Rett Syndrome, a rare genetic neurological disorder which leads to severe impairments. It affects nearly every aspect of life, including her ability to speak, walk, eat, and breathe.

Now a freshman at Bay Port, Kira’s positive experiences of inclusion began at Bay Harbor and continued through Lineville and Bay View. With encouragement from Bay Port band directors Ashley and Kyle Siegrist, the latest activity at school aligns beautifully with her passion for music.

On Friday evenings under the bright lights of the Bay Port Pirate stadium, you can find Kira in her all-terrain wheelchair, performing with the Bay Port band. Kenz Mevis, one of Kira’s most influential advocates, marches alongside their younger sister.

Kira’s Journey to the Field

The inspiration for Kira to march in the band began in her sixth grade classroom at Lineville, following a suggestion made by Mr. Chris Miller.

“A rule in the Mevis house is that every kid needs to learn an instrument,” said Patty Mevis, Kira's mother. “Mr. Miller was the first one to suggest that Kira should join band.”

Kira’s brother Carson, Bay Port Class of 2020, played the trumpet and Kenz played clarinet during their tenures in the Bay Port marching band. Even Kira’s parents come from musical backgrounds. Her mother played piano and violin and her dad, Matt, dabbled in trombone.

At the same time Mr. Miller suggested Kira join the band, the Mevis family was making frequent trips to Minnesota for a drug trial. On their way to-and-from Minnesota, they would stop at UW-Eau Claire to watch Kenz march with the Blugold Marching Band.

“Kira always lit up when she would come visit me at college and watch our marching band performances,” Kenz said. “In fact, she was given the title of Blugold Marching Band’s (BMB’s) Biggest Fan.”

Early in her life, Kira attended Syble Hopp School and went to daycare at the CP Center. She greatly enjoyed the CP Center because she was surrounded by verbal peers. Because she loved being with these children, her parents made the decision to enroll Kira in the Howard-Suamico School District (HSSD).

“We went on a wing and a prayer to enroll Kira in HSSD,” said Patty. “It has not been a perfect road, but everyone who has come in contact with Kira has learned.”

Patty continued, “The inclusive piece of this is that Kira is just like other kids and much of her success relies on regular education teachers.”

Teachers like Erin VanEnkevort and Gina Blahnik at Bay Harbor, Chris Miller at Lineville, and Brooke Hoffman and Dana Martin at Bay View have made a difference. “I know she [Kira] is intense. We’ve spent 15 years learning about it [Rett Syndrome] so we appreciate when teachers seize the moment to maximize potential,” Patty explained.

Putting the Puzzle Pieces in Place

Entering high school, Patty had goals for Kira. Just as they have been her entire life, these goals were for Kira to develop meaningful friendships, to learn alongside her peers, and to have an inclusive experience in all areas of school.

The first puzzle piece: Kira’s new teachers

When it came time for Kira to register for classes at Bay Port, Ms. Sherri Hammen, Bay Port special education teacher, suggested that Kira register for band.

Much to Patty’s delight, Mrs. and Mr. Siegrist were in full support.

“There are no boundaries on how they work to include Kira,” Patty said. “They do the little things that may not seem like a lot to them, but they make a huge difference for our family and for families to come.”

Mrs. Siegrist has taken the time to get to know Kira and her passions. Upon learning that Kira loves national parks, Mrs. Siegrist sent home a book on the topic. In order to make Kenz feel welcome when helping Kira, she sent home a Bay Port band t-shirt for Kenz to wear. In a setting where most kids can enter a room and make their presence known, Mrs. Siegrist noticed that Kira could not do the same. Because of this, she took time out of a rehearsal to introduce Kira and Kenz to the entire band.

“My mission as an educator is to use music as the lens to help students grow and develop into hard-working, compassionate, dedicated, and resilient members of our community,” said Mrs. Siegrist. “I constantly tell my students that I want them to leave my classroom each day a little bit better than when they came in. This applies to all students in all situations from all different backgrounds.”

The second puzzle piece: Kira’s new all-terrain wheelchair

Making Kira’s marching band goal even more attainable was an all-terrain wheelchair acquired through a fundraiser led by Bernie Donovan, Speech and Language Pathologist at Forest Glen and a Mevis family friend.

Patty had mentioned to Bernie that she hoped to get Kira an all-terrain chair so that Kira could participate in adventures that other teenagers can experience. However, the cost for such equipment is quite prohibitive.

To help the Mevis family, Bernie set up a fundraiser. She said, “Through the help of the community, we had the funds secured for Kira’s chair in less than one week!”

With the aid of this all-terrain wheelchair, Kira can move more smoothly on uneven surfaces, allowing her to go to the beach, go on walks through grass, and, yes, even march on the Bay Port field.

The final puzzle piece: Kenz’s kind heart

After graduating magna cum laude at UW-Eau Claire, Kenz returned to the area as the Middle School and Adaptive Art Teacher at Red Smith K-8 School in the Green Bay Area Public School District.

A 2016 Bay Port graduate, Kenz found a home in the Bay Port marching band during their time as a high school student. Kenz understands the marching sequences and feels honored to share with little sister Kira the same musical experience they enjoyed as a Bay Port student.

On the field, Kenz gets Kira exactly where she needs to go in her all-terrain wheelchair. They are focused on keeping their turns sharp and making sure Kira gets to her next dot (marching band term) on time.

Kenz said, “Having this experience with her has strengthened the bond between us. Being part of the band has been a dream of hers for a while.”

The pieces come together

As Kira moves ahead in her marching band experience, Mrs. Siegrist is dedicating time to finding an instrument and band uniform pants that will work for Kira. “Nothing’s ever enough for Mrs. Siegrist,” Patty said. “She is always looking for that next step. She and Mr. Siegrist are authentic.”

What Patty appreciates most about this inclusive experience is that music gives Kira another platform of connection, giving her an ability when the world so often focuses on a disability.

“Music is a universal language and friends can see her smiling and enjoying music, just like they do,” she said.

Hope for the Future

Looking ahead, it is Patty’s profound hope that Kira can pave the way for other families to have inclusive experiences at HSSD and in this community. She believes that comes down to kindness.

She said, “We might not get it perfect for her, but my hope is that we leave a path behind us for staff to take on the next kid who comes through. We need to challenge ourselves to take it to the next level.”

“Everybody needs to be kind, whether or not a person has a disability. We want Kira to have authentic friendships, an even playing field, and an environment where we maximize possibilities,” Patty continued.

Reflecting on the years Kira has spent at HSSD, Patty looks back fondly at students who went above and beyond to connect with Kira. One such example is Kira’s involvement in Running Club, which is made possible by her peers. Kira’s passion for running began when she attended Bay Harbor. Kira now has her own racing chair through MyTeamTriumph and has been partnered with amazing students like Clara Reindl, current Bay Port freshman, who completed a mini-triathlon with Kira.

Patty has seen firsthand the benefits of educating other students about Kira’s condition and conveying that Kira is a teenager who enjoys the same things they do.

“When we give other kids the opportunity to rise, they rise,” Patty said.

Band is one such example where the barriers are being removed. “Because of her new all-terrain wheelchair and a couple of teachers who are willing to find a little more energy to go the extra mile, she no longer has to be a spectator,” concluded Patty.

Kenz added, “Inclusion really is everything. This entire experience is not possible without people like the Siegrists who are open to working with us to include Kira, or her teacher Mr. Miller who pushed for Kira to be a part of the band, or our mom who has advocated non-stop to give Kira opportunities like this.”

“I don’t think people always get a chance to see the behind-the-scenes of inclusion and just how much work goes into it. It wasn’t easy getting to this point, but I am so happy Kira is able to get out on that field and live her dream.”

By: Kimberly Uelmen, HSSD Communications Specialist