When 5-year-old Leo Peper was diagnosed with neurofibromatosis at 9 months old, his family was devastated, his mother Tandy Wolters said. They had never heard of the genetic disease, which currently has no cure.
“Watching and waiting and kind of the unknown is the hardest part about NF,” Wolters said. “We had to learn early on to promise ourselves and promise Leo that we could not live in a daily state of worry, thinking about all the things that could happen. We just had to focus on living each day as normally as we could – whatever normal is – and kind of confronting things when they came up.”
Neurofibromatosis (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, according to the Mayo Clinic. The tumors grow along nerves and form in the brain and spinal cord. NF can result in blindness, bone abnormalities, deafness, high blood pressure, learning disabilities, motor delays, pain and disfigurement, sometimes cancer, and other ailments.
From ages 2 to 3, Leo underwent chemotherapy to address a tumor that was growing in his hypothalamus, the part of the brain that regulates body functions such as temperature. Though chemo was successful and the tumor has not grown, full removal by surgery is not an option and Wolters said they have to keep a close eye on it because they’re always unsure of what could happen.
Tiny tumors live on Leo’s optic nerve, but they remain stable. The main concern right now is his plexiform neurofibromas, which are large tumors that grow under the skin and can cause issues if they move into his bones, organs, nerves or other areas. He also has a tumor between his lung and rib cage. Everything is a “watch and wait” scenario for Leo and his family, Wolters said. His brain, chest and abdomen will now be scanned every year, and if new tumors show up or existing ones grow, they’ll be prepared to weigh their options.
Leo, who Wolters describes as the “extrovert of the family” with an incredibly active imagination, has been a fighter throughout all the treatments and appointments.
“One thing about Leo is that he wants to learn — he wants to try,” Wolters said. “Even when things are difficult, he is such a hard worker. He’s so positive.”
NF Type 1 (NF1) typically affects children. One in 2,500 people are born with NF1, the most common type, and NF does not discriminate. Though NF is still considered a rare condition, patients may have mild cases that turn more aggressive with age. Sometimes the disease lies dormant in people, so many cases go undiagnosed, and no two cases are the same.
Autumn Schierling, 13, was born with NF, and the initial shock and aftermath were overwhelming, her mother, Lindsay Brewer, said.
Autumn has a tumor on the right side of her face over her eye that intertwines in her brain and around her carotid artery, as well as another tumor in her intestinal area. But Brewer said especially as Autumn has gotten older, NF doesn’t really affect her daily activities — and certainly not her social life.
“She does look different, but she’s embraced it and she is like the life of the party,” Brewer said. “She will be front and center if she can, so she was born to be somebody who can take it. Since she was little, people would come up to her, like other little kids. They just want to know, and she has kind of trained herself to just say, ‘I was born this way,’ and then kids move on. I mean, they just are curious.”
Autumn chimed in that she has lots of friends, and her favorite activities are going downtown with her buddies and doing art.
Advocacy and hope for a cure
Doctors initially diagnosed Autumn with infant glaucoma, and she had seven eye surgeries within her first year of life. After then seeing a neurologist, because glaucoma usually affects both eyes and only Autumn’s right eye was affected, the neurologist diagnosed her with NF and referred her to the National Cancer Institute in Bethesda, Maryland.
Since Autumn was 2 years old, she has been traveling to Maryland to participate in testing at the NCI. When she was 5, she began taking Koselugo (selumetinib), a medicine to shrink her tumors. For the most part, it worked for her, Brewer said. That medicine in 2020 became the first FDA-approved NF drug treatment for children ages 2 and older, targeting their tumor cells to stop growing.
Though selumetinib is not successful for all patients and can cause an array of side effects, Autumn’s side effects became subdued the longer she used it, and she became an integral part of showing researchers that the medicine does help some patients.
During an interview for this story, Autumn excitedly shared signs from past Shine a Light NF Walk events in Kansas City.
Both families will be participating in the next walk, set for Sept. 23 in Lenexa, to raise money for the Children’s Tumor Foundation (CTF), the leading advocacy organization for NF.
Wolters said she and her family want Leo and other people living with NF to have the richest lives possible, but they also advocate for a greater benefit.
“It’s a way to positively channel our energy. We kind of turned that anxiety into working for a cure,” Wolters said. “A lot of the research that goes into NF can be extrapolated towards the general population. We all know someone who has cancer, we all know someone who has visual impairments, we all know someone who’s dealing with pain, and so a lot of the research that’s going into Neurofibromatosis can be used towards the general population.”
CTF provided the initial research and funds that led to the first FDA-approved NF drug treatment. Wolters said she is optimistic that pharmaceutical companies and organizations will continue taking increased interest in NF as more treatments undergo clinical trials, eventually leading to a cure.
“We hope for a cure one day,” Wolters said. “And in the meantime, we hope for effective treatments that will improve the lives of people with NF. We believe in CTF, and I’m optimistic that in Leo’s lifetime, we will be very close to — if not have — a cure. It kind of gives me goosebumps to think about.”
Shows of support in Lawrence
Buildings and landmarks around the world are lit blue and green during the month of May, including Lawrence’s Landmark National Bank, Lied Center of Kansas, and Bowersock Mills & Power Company.
And Runza Restaurant in Lawrence on Friday, May 19 will donate 10% of its proceeds to CTF, as the owners have done in previous years.
Mayor Lisa Larsen during the upcoming Lawrence City Commission meeting will acknowledge May as Neurofibromatosis Awareness Month, and May 17 as World Neurofibromatosis Day, with a proclamation reading.
The meeting is scheduled for 5:45 p.m. Tuesday, May 16 at City Hall, 6 E. Sixth St. Community members can also tune in virtually via the city’s YouTube livestream.
“It’s been nice to have a community that has been willing to listen and help us spread the awareness,” Brewer said. “It allows us to focus on it. She has NF, and that is a daily scenario, but we also just do daily life. It’s nice to focus on that and remind people what it is and just advocate for my daughter.”
To learn more about NF and CTF’s advocacy work, visit CTF.org and follow the organization’s Facebook page.
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Note: This post has been corrected from a previous version.
Maya Hodison (she/her), equity reporter, can be reached at mhodison@lawrencekstimes.com. Read more of her work for the Times here. Check out her staff bio here.
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