SYCAMORE – Fifteen-year-old Tyler Neppl of Sycamore will travel to the Children’s Hospital of Philadelphia in November to have his fourth surgery in three years.
Neppl, a sophomore at Sycamore High School, has neurofibromatosis type 1, a genetic neurological condition that affects the nervous system and can cause tumors to grow on nerve endings. He has sphenoid wing dysplasia and is missing the bone that protects the optic nerve from the brain. He also has a large tumor growing in the area. Left untreated, the pressure from both his brain and the tumor pushing against his optic nerve will lead to blindness in his left eye. He already has received two rounds of chemotherapy to help shrink the tumor.
The surgery, a left frontal craniotomy, will remove part of Neppl’s skull. Doctors will use 3D imaging to create a prosthetic bone and raise his eye. The new prosthetic bone will be made of polymer plastic and will last a lifetime.
Because of the risk of the surgery and swelling, a second surgery will be needed six months after the first one to remove the tumor.
Neppl’s parents, Shaun and Heather Neppl, will accompany him to Philadelphia for the surgeries. Although the first surgery will take place on Nov. 9, they have to arrive on Nov. 5 for pre-surgical tests, blood work and visits with doctors. The family also may need to quarantine in Philadelphia for two weeks prior to the surgery if the COVID-19 pandemic worsens. Tyler’s older brother, 17-year-old Carter, will remain at home with family until after Tyler leaves the intensive care unit one or two days after surgery.
Tyler Neppl will remain in the hospital at least a week after his surgery, and it will be at least six weeks before he can do any type of activity.
“I try not to think about the surgery, but when I do, I’m nervous and scared of the unknown,” Tyler said.
A GoFundMe account was created to help the family offset medical bills and travel expenses. The family also is selling #TeamTyler #ENDNF wristbands for $5 and T-shirts for $35, which can be bought by calling 815-901-7021. Donations can be made under the Tyler Neppl Account at Old Second National Bank, 1810 DeKalb Ave. in Sycamore.
“It’s a way to raise awareness about neurofibromatosis,” Shaun Neppl said. “One in 2,500 children are diagnosed with NF every day. The more awareness, the more fundraising, the more medicine, and hopefully, one day, a cure.”
The staff at Curtis & Barysenka Sycamore Orthodontics bought T-shirts and wristbands to support Tyler.
“Tyler is a very special person and truly has a warm heart,” Dr. Piotr Barysenka said. “His positivity and joy for life is always apparent from the moment he walked into our doors. His presence always makes an impact on our day because of his ear-to-ear smiles and upbeat personality. We are thankful to have the pleasure of sharing some special moments with Tyler, and it goes beyond the idea of helping to make his smile a little brighter. The impact that Tyler’s vibrance and beautiful spirit has on our office is the reason why he is one of our favorite patients.”
Nan Phillips, a nurse at Sycamore High School, met Neppl when he started as a freshman at the school.
“He has always worked hard in school and never took a day for granted,” Phillips said. “Even when he was not feeling well or in pain, he made every effort to try to make it back to his classes. Tyler is such a strong young man. He is a fighter.”
Shaun Neppl said the support his family has received so far has been “amazing and overwhelming.”
“Going through this experience has shown me that there are a lot of good people in the world,” Shaun Neppl said. “The support of family, friends, the community, even strangers we’ve never met, mean so much to us.”
Shaun Neppl said that if it weren’t for the pandemic, he would “love to hug and thank everyone I could for their help and support.”
“What I’ve been touched by the most is that complete strangers, people we’ve never met and will probably never meet, have been donating,” he said. “They really have helped make a difference in our family’s life, especially Tyler’s life.”