Lawrence kids, teacher with neurofibromatosis maneuver through school, advocate for one another

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Lawrence teacher Andrea Kelly hadn’t known anyone with the same rare genetic disorder she has until a fearless 5-year-old walked into her kindergarten classroom.

After meeting Leo Peper and his family during Deerfield Elementary School’s kindergarten orientation in April 2023, Kelly leapt to submit a request to be his teacher. As both are living with neurofibromatosis (NF), the pairing would prove to be mutually beneficial, she said.

“Outside of, I guess, a clinical group, he was really the first person I met who has NF,” Kelly said.

“Seeing it in a student of mine — I would have loved to have a teacher who had that similarity to me growing up.”

Contributed photo Leo Peper in front of Deerfield

NF can affect numerous systems throughout the body, but it is primarily characterized by tumors that are usually benign, both on and under the skin. The tumors grow along nerves and form in the brain and spinal cord, making their removal complicated or impossible.

Leo, now 6, was diagnosed with NF at 9 months old. Since last year, he’s been doing pretty well, according to his mother, Tandy Wolters.

The large tumor on his side and the tumor in between his lung and rib cage are both growing but not rapidly enough for immediate intervention, so his family and doctors have to closely monitor.

Because of his condition, he sometimes has trouble with his breathing, and he gets a lot of respiratory infections.

That doesn’t dim his shine. He loves socializing and expressing his personality, two of the many qualities Wolters loves about him.

He’d opt to come to school in costumes with a cowboy hat, sheriff’s badge, paper mustache and beard, and other creative combinations. Kelly was fully supportive, and other kids were, too — because that’s just Leo.

“Leo is such a joyful kid, and very imaginative,” Wolters said. “(Kelly) was always so thoughtful and wanted to make the experience accessible for any kiddo, not just Leo. And then she’d create a teaching moment, talking about how everyone has different likes and dislikes and everyone’s a little unique and it’s OK to like any color or any outfit, you know, we’re all the same on the inside.”

Kelly discovered in sixth grade that she had a plexiform tumor, a large tumor under the skin, that was growing.

Doctors diagnosed her with NF Type 1 (NF1), which one in 2,500 people are born with. As she’s transitioned into adulthood, it’s become harder to be granted medical appointments. Most specialists are in pediatrics, she said.

When Kelly emailed Leo’s family after the Deerfield orientation to tell them she also had NF, Wolters became emotional.

“I just bawled my eyes out,” Wolters said. “Any parent sending their kid off to kindergarten, but especially one who’s got these challenges, you’re feeling horrible. And then just to know that his teacher knows where we’re coming from, it was just very powerful.”

Andrea Kelly visits the Appalachian Mountain area. She wears a compression sock and a brace every day, and her plexiform tumor is slowly growing, but she remains active. (Contributed photo)
Kelly and her dog, Grace, visit Colorado. (Contributed photo)

Seeking support in schools

New beginnings are soon coming for Autumn Schierling, 14, too. She’ll be entering her freshman year at Free State High School in August.

Autumn was born with NF. She has a tumor on the right side of her face over her eye that intertwines in her brain and around her carotid artery. Another tumor lives in her intestinal area. Her mom, Lindsay Brewer, said the tumor is currently considered stable.

Brewer said having NF doesn’t really impact Autumn’s daily activities — and certainly not her social life. She still enjoys going downtown with her friends and creating art. And this summer, she’s participating in a high school band camp, continuing her clarinetist journey from middle school.

Since Autumn was 2, she’s been traveling with her family to Bethesda, Maryland to participate in testing for a few case studies at the National Cancer Institute. When she was 5, she began taking Koselugo (selumetinib), a medicine to shrink her tumors. For the most part, it’s worked for her.

Selumetinib in 2020 became the first FDA-approved NF drug treatment for children ages 2 and older, targeting their tumor cells to stop growing. Autumn has helped show researchers that the medicine does help some patients.

As she prepares to transition to high school, the district is supposed to be connecting with Autumn’s family either right before or shortly after the school year begins, but Brewer’s concerned that there’s no solid plan in place yet.

She said Autumn struggled, more than ever before, in her classes this year, even with her parents and Boys & Girls Club staff working with her after school. She has an Individualized Education Program (IEP) and meets with a special education teacher, but Brewer felt Autumn’s needs were placed on the back burner.

“I don’t know if there’s just not enough people to go around, but there’s people who maybe have more needs than Autumn and so she doesn’t get as much help as she maybe does actually need,” Brewer said. “It’s difficult when you go to school and you feel like, ‘I’m the only advocate for Autumn.’”

Recently, Leo has become more cognizant about his condition. Last month, he told his mom he thought everyone in his family had NF because they all wear awareness T-shirts. 

“I just kind of had to explain, like, ‘That’s because we are supporting you and you are our hero,’” Wolters said. “I could tell he was saddened by that. There was a realization that he was alone. But I said, you know, ‘Autumn has NF, and Ms. Kelly has NF.’”

Like Autumn, Leo also has an IEP in the district. When issues with it arose, Kelly was able to be there for him.

“Right now, there’s no real academic concerns, but of course as time goes on, that’s going to be something that we’re looking at very closely, just because learning difficulties are very common with kids with NF,” Wolters said.

Advocacy and awareness

Both families and Kelly attended the Lawrence City Commission meeting on May 14, where Wolters spoke to commissioners about NF. Mayor Bart Littlejohn proclaimed May NF Awareness Month and May 17, 2024 as NF Awareness Day in Lawrence.

In showings of support, buildings and landmarks around the world are lit blue and green during the month of May. As they’ve done annually, Lawrence’s Landmark National Bank, Lied Center of Kansas, and Bowersock Mills & Power Company participated.

Jake Brewer (left), Autumn Schierling, Riley Schierling and Lindsay Brewer attend the May 14, 2024 Lawrence City Commission meeting, where a neurofibromatosis awareness proclamation was read. (Contributed photo)
Autumn, right, and her sister, Riley Schierling, visit the Bowersock Mills & Power Company building in May. (Contributed photo)

NF currently has no cure, but the Children’s Tumor Foundation (CTF) and other organizations are hard at work to find one. In the meantime, advocates and researchers are focused on resources to improve the lives of people with NF.

To read more about Leo and Autumn’s stories, check out this article. To learn more about NF and about CTF’s advocacy work, visit ctf.org and follow its Facebook page.

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Maya Hodison (she/her), equity reporter, can be reached at mhodison (at) lawrencekstimes (dot) com. Read more of her work for the Times here. Check out her staff bio here.

Note: Two captions in this post have been corrected.

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