photo by: Mike Yoder

From left are Lindsay Revenew, her daughters Autumn Schierling, 11, and Riley Schierling, 13, and husband Jacob Brewer. Autumn has neurofibromatosis, a genetic condition that causes tumors to grow along her nerves.

Autumn Schierling tells how everyone in kindergarten — “the whole entire class, except my three friends” — laughed at her on the first day of school.

“I cried,” she says, but her tone is matter of fact, like someone talking about ancient history.

“It was after you dropped me off,” she says to her mom across the table. Her mom, Lindsay Revenew, nods, knowing this story and that it’s not the sweet memory most families have of their child’s first day of school.

But that was six years ago, and 11-year-old Autumn is now an old hand at absorbing the insensitivity of others and explaining why her face looks the way it does.

“I was born this way” is something she learned to say at an early age, before she even understood neurofibromatosis and the large tumor it produced on the side of her head that keeps her right eye from opening.

photo by: Contributed

A family photo shows Autumn Schierling as a toddler. Autumn was diagnosed with neurofibromatosis type 1, or NF1, at 6 months old.

“When Autumn was a baby we had to learn together to be comfortable with her unique situation,” her mom says. “At first I noticed every single person that stared at us. If a kid pointed or stared, I told them she was born this way. As she got older and could speak for herself, I told her to tell people the same.”

Soon the simple statement was accompanied by a friendly preemptive strike.

“If a kid was staring I would tell her to wave and introduce yourself,” Revenew says, and Autumn has mostly found success with that approach.

Still, she’d rather not explain. She’d rather people not ask her mean questions or stare.

For a while she draped her long, light brown hair over her right eye, hoping to shield it — and her battered feelings — from the painful attention.

“I did it even at home,” she says. “I don’t know why. But I mostly did it at school — and a couple years later, I said, ‘I don’t need that anymore.'”

Today she wears her hair pulled back from her face as she romps with her two big dogs, Lennon and Ziggy — she’d like to be a veterinarian when she grows up — and talks about playing the clarinet and social studies, her favorite subject at Liberty Memorial Central Middle School.

“I just like learning about the different Native American tribes,” she says of Ms. Mckenzie Combes’ sixth grade class.

photo by: Mike Yoder

Autumn Schierling, 11, second from left, roller-skates with her family Tuesday, Sept. 22, 2021. From left is her mother, Lindsay Revenew, Autumn, her stepfather, Jacob Brewer, and her sister, Riley Schierling, 13.

Revenew says the Lawrence school district has played an important role in normalizing Autumn’s experience. Each school year on Neurofibromatosis Awareness Day, May 17, Autumn has gotten to do a presentation at school.

“I talk about what I have and show pictures and show some of the videos that I have,” Autumn says, “and I bring my stuffed animal that I always bring. His name is Barry. I got it when I was a kid. A guy named Mo, when I wouldn’t stop crying, he gave it to me.”

“Mo” is an anesthesiologist who was on one of Autumn’s many medical teams, Revenew explains.

Revenew says she was “extremely nervous,” this being Autumn’s first year in middle school, “that the kids would be very mean.”

“I ask Autumn every day if everyone was nice to her,” Revenew says, “and so far it’s always a yes.”

Autumn is one of about 2.5 million people worldwide living with neurofibromatosis, or NF, according to the Children’s Tumor Foundation.

Autumn’s genetic condition, known as NF1, causes tumors to grow along the nerves. She was officially diagnosed when she was about 6 months old, and she underwent seven surgeries in her first year of life.

Revenew, like most people, had never heard of neurofibromatosis.

“I immediately had so many questions which there weren’t answers to because NF affects people in different ways,” she says. The tumors can grow anywhere in the body and can lead to a variety of conditions, including blindness, bone abnormalities, disabling pain and sometimes cancer.

In Autumn’s case, it has meant two benign tumors: the one in her head, which is intertwined with her brain, and one in her abdominal area. These tumors have proved too invasive to remove with surgery, but she was “a good candidate for medication,” Revenew says.

Autumn visits the National Institutes of Health in Bethesda, Md., about four times a year for regular checkups and to track progress on the several clinical trials she’s involved in.

One clinical trial resulted in the FDA approval last year of a medication known as Selumetinib, also called Koselugo, which was hailed as a medical breakthrough as the first treatment for NF1. The drug has shrunk Autumn’s head tumor by about 19%, Revenew says, and the family is hopeful that further medical research will lead to more progress.

Although NF1 commonly progresses with age, Revenew says, “We take things day by day,” rather than stressing “about what could happen in the future.”

photo by: Contributed

Autum Schierling’s family takes part in the NF Shine a Light Walk in Lenexa on Saturday, Sept. 25, 2021. From left is Autumn’s mom, Lindsay Revenew; Autumn’s sister, Riley Schierling; Autumn; and Autumn’s stepdad, Jacob Brewer. Autumn’s dogs are Lennon, left, and Ziggy.

On Saturday, Autumn’s family took part in one of her favorite activities, the NF Shine a Light Walk in Lenexa. Hosted by the Children’s Tumor Foundation, the walk is intended to increase awareness about neurofibromatosis and to raise research dollars.

This past week, as Autumn roller-skated with her family at their central Lawrence home, she said she was looking forward to the NF event because it was a chance for her to just be a regular kid.

“Everyone there knows what I have, so I don’t have to explain it,” she said.

Asked about the “fighter” shirt she was skating in, she pointed out that her family members had shirts that read “I know a fighter.” Then she said: “I’m the fighter.”

Though the NF Shine a Light Walk was Saturday, donations to Autumn’s team can still be made online at https://join.ctf.org/fundraiser/3151407.