On the outside, Yoseph Williamson looks like a typical 14-year-old. He’s a personable kid with an easy smile and a curious mind. But lying beneath his skin are a number of painful tumors from a genetic disorder that confounded his parents and doctors for years.

Neurofibromatosis type 1, or NF1, is a condition that develops benign tumors on the nerve endings, causing debilitating pain and other medical issues. Yoseph, who was adopted from Ethiopia at 18 months, was diagnosed with NF1 shortly after arriving in the U.S. when his parents noticed dark brown spots on his skin, which led to the discovery of a large tumor on a leg nerve.

“Anywhere there’s a nerve, that’s where these tumors go,” said Courtney Williamson, Yoseph’s mother.

As Yoseph’s medical problems began to multiply, the family struggled to find the kind of coordinated care that could enable him to lead a somewhat normal life.

“There just weren’t a ton of resources in Oregon, where we lived,” Courtney said. “It was frustrating.”

Last year, after learning about a multidisciplinary clinic at Children’s Hospital Colorado, the Williamson family moved to Colorado Springs. For Yoseph and the family, the move has been a “game-changer,” Courtney said.

“Before, we never had our doctors talking to each other,” she said. “We didn’t have his neurologist talking with the kidney doctor, or his lung doctor talking to his heart doctor. That has changed our lives massively.”

Nick Foreman, a Children’s Colorado neuro-oncologist specializing in NF1, said that coordinated care is essential when treating a patient like Yoseph.

“For a complex patient like Yoseph, it’s really necessary to have a good idea of what’s happening in all the other specialties, so you can cooperate across the specialties,” said Foreman, who has been at Children’s Colorado since 1995.

“He has a number of other conditions, with other specialists involved, and we work together to treat him.”

According to the Mayo Clinic, neurofibromatosis affects about one in 2,500 people, so the condition is relatively rare. But it occurs often enough to keep Foreman and his team busy. About five years ago, Foreman started a clinic to address the disorder, which causes pain that even strong opioids like codeine and morphine cannot touch.

“Prior to the advent of new therapies, treatment of (NF1) was absolutely terrible,” he said.

“Patients didn’t respond very well to morphine or codeine, and they were left in an awful lot of pain. The opiates carried all the risk of addiction without being terribly effective. It was really the worst of all worlds.”

The most effective NF1 treatment involves a MEK inhibitor, a substance similar to chemotherapy that inhibits the development of the proteins that cause tumors.

“It’s been a real breakthrough,” Foreman said. “It’s effective where codeine and morphine don’t work, and it has none of their addictive properties. It actually shrinks (the tumor) as well.”

Yoseph and his family have developed fond relationships with the medical professionals at Children’s Colorado, according to Foreman.

“He’s a fantastic kid,” Foreman said. “He has more than one problem, and yet he’s so strong and so brave. He doesn’t let anything get him down. Also, he’s fortunate to have such caring parents.”

A member of the Homeschool Science Colorado team that recently won First Place in the state Science Olympiad, Yoseph is fascinated with most STEM-related topics, including certain aspects of his own condition, his parents said.

“He would ask the doctors to show him pictures of his surgery, or he would ask to keep his biopsy sample,” said Chad Williamson, Yoseph’s father. “And because doctors are science oriented, they would let him. I think those things are gross, but he thinks they’re cool.”

Although Foreman believes Yoseph’s long-term prognosis is “really very good,” there is no known cure for NF1, and Yoseph likely has many therapy sessions and hospital visits in his future. His parents hope he can one day lead a normal life, but Yoseph’s ambitions are loftier.

“I’m going to be an immunologist,” he said. “I want to cure cancer and win the Nobel Prize.”