Her mother counted 200 tiny dots on her skin before she gave up.

The flesh colored bumps cover 11-year-old Brenna Stearns. They are clustered on her neck, face, back and cover her entire body. Some clusters have 30 or more spots on one tiny piece of flesh.

All are cancerous or can turn cancerous.

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And doctors and her family are having trouble figuring out how to treat the spots that have arisen from her rare genetic disease.

The fifth-grader at Custer Baker Intermediate School was diagnosed with Nevoid Basal Cell Carcinoma Syndrome about two years ago.

Neither of her parents, Christy and Troy Stearns, have it. Her 14-year-old brother Cole escaped it too.

Her geneticist told her family that it is rare, with only three of his patients having the disease in the decades since he began practicing.

Nevoid Basal Cell Carcinoma Syndrome causes large amounts of skin cancers all over the body of those with the disease. Pits are formed on the hands and feet and bone disorders, such as scoliosis and jaw tumors, are frequent, Christy Stearns said.

Her parents said they think she got the disease because she has an issue with a tumor suppressing gene.

Her parents noticed the first signs of the disease when she was a toddler. She was developmentally behind most of her peers. Walking didn’t happen until she was four months shy of her second birthday. Talking was delayed as well. Riley doctors found fluid in her skull, but weren’t concerned.

A pediatrician didn’t think much of the flesh-colored dots around her eyes or the pits and spots on her feet. Her disease went undiagnosed until she went for a checkup at her pediatric dentist.

An abnormality showed up on her X-ray. She was referred to an oral surgeon who took a tumor out of her jaw. Six months later at another routine check-up, another jaw tumor had formed and grown.

Her dentist pulled Christy and Troy into his office and told them what he thought: that there was a genetic disorder that caused jaw tumors and he suspected Brenna might have it.

“He opened up a medical book and I saw those pits on her feet,” she said.

It was then that she knew.

The family was referred to a geneticist, who could couldn’t see them for four months. So they waited, and they researched.

“Those four months, we just got on Google and learned as much as we could,” Christy Stearns said.

Finally when they saw the geneticist, they knew exactly what they were looking at, she said.

They were referred to two dermatologists, a cardiologist and a pediatric opthamologist who help treat each aspect of the disease.

One of the first goals was to figure out how to treat the hundreds of spots that covered her skin.

Radiation was out since it would damage her heart and ovaries and she was already susceptible to fibromas on those organs because of the disease.

They tried topical creams. Two never worked to treat the tiny spots. A third offered improvement, but they decided that the new side effects and research that was coming from studies of the cream, including other diseases, wasn’t worth the risk.

Cutting out more than 200 spots isn’t an option either, since that would require taking huge swaths of her skin, Christy Stearns said.

“They won’t just go away on their own,” said Troy Stearns.

Her dermatologists are hoping that a new laser technology can be used. They will try that option in about a month.

“That is the last thing to try for now,” said Christy Stearns.

For now, a new normal has been established in her life.

Brenna Stearns was diagnosed as a 9-year-old, so most of her life seems normal to her already, she said.

She never spends more than 15 minutes out in the sun and never between 10 a.m. and 2 p.m., when the sun is the strongest and brightest.

And time spent in the sun means layers. Layers of sunscreen, layers of clothing, layers of hats and glasses and other accessories meant to stop her spots from growing and to prevent new skin cancers from starting.

A 15-minute recess outside means slathering up in sunscreen to the stares of her classmates. And about every other week, she will miss a half day of school as she makes the rounds to her half a dozen doctors who are trying to give her a life with the disease.

Through it all, she has found a normal life, her parents said.

The fifth-grader at Custer Baker Intermediate School is an avid dancer, riding the bus to Style Dance Academy daily after school to take her nightly lessons. And her family vacations at the beach, where they plan their beach time around Brenna and her skin. If they want to go to the beach during the day, layers and layers of clothes are a must.

Mostly, they just swim at night, Troy Stearns said.

“When you don’t have a choice, it just becomes a new normal,” Christy Stearns said.

Author photo
Magen Kritsch is an editorial assistant at the Daily Journal. She can be reached at mkritsch@dailyjournal.net or 317-736-2770.