Duluth families come together in battle with neurofibromatosis

May 19--At 4 years old, Kiran Judd already has a team of 14 medical professionals on his case.

"He has a neurologist and he has an endocrinologist and he has a pediatric oncologist," said his mom, Laura Judd, as she began to tick off a partial list. "He has his regular doctor, and he also has his physical medicine rehabilitation doctor who coordinates his physical therapist. And he goes to occupational therapy. He's seeing a pulmonologist."

For all of those specialists, you might not notice anything about Kiran that's different from any other 4-year-old boy.

"He is living life as pretty much a typically developing child," said Laura, who lives with Kiran, older son Micah and husband Matt in Duluth's Lakeside neighborhood.

But there is the daily injection. And the doctors from three different health systems. And the constant threat that a tumor will attack somewhere in Kiran's nervous system and grow unchecked.

When he was 2, Kiran was diagnosed with neurofibromatosis (NF), a genetic disorder that affects one in 3,000 people and removes the body's defense against nervous-system tumors. Local families affected by NF are calling attention to the disorder with a "Shine a Light on NF" event on Saturday.

NF can birth such complications as brain tumors, blindness, deafness or scoliosis -- or do very little damage at all, Laura said.

"They don't know who's going to get it, when they get it and how severe," she said of the complications. "They call it a watch-and-wait disorder."

Laura knew nothing of NF in January 2013 when she gave birth to Kiran, who started life at more than 10 pounds. But the Judds started to notice delays in their baby's muscle development, and by the end of his first year he had stopped growing. They were referred to an endocrinologist who noticed light brown spots of varying sizes on Kiran. They're known as cafe au lait spots, after the French term for coffee with milk. Although not harmful in themselves, the spots can be an indicator of one of several diseases, syndromes or disorders, the Judds learned. A diagnosis of NF was confirmed in October 2015 through genetic tests and blood work.

There's no cure for NF, the Judds learned. Instead, symptoms are managed as they occur. Life expectancy isn't generally affected, but quality of life can be, Laura said.

Although a genetic disorder, it's passed down from previous generations in only about half of the cases, she said. The Judds have no family history of NF, so Kiran's case is classified as "spontaneous."

But if a parent has NF, there's a 50-50 chance that any child also will have it.

Amanda Baker, who lives in Gary-New Duluth, was diagnosed with NF soon after birth, after her older sister was diagnosed. The older sister's complications were so severe that one leg had to be amputated when she was less than 2 years old. At the time, Amanda's mother realized for the first time that she also had NF, and she suspected that her father and her grandfather also had it, Amanda said.

The 50-50 odds played out with John and Amanda Baker's children. Their son Isaac, 10, has NF; their 6-year-old daughter has shown no signs of it.

Isaac has a twisted tibia in one leg, his mom said. Although corrective surgery has helped, he wears a brace on the leg and probably will need to do so for the rest of his life. He has muscle weakness and tends to get bullied. The Bakers moved their son out of public school and into a smaller, private school for that reason.

Lydia Priest's story is more like Kiran Judd's. Lydia was healthy when she was born in 2009, said her mother, Rebekah Priest. But her development lagged, and the Priests -- Aaron and Rebekah -- began to consult medical professionals. Like the Judds the Priests had no family history of NF, but eventually Lydia was diagnosed with the disorder.

Now 7 and in first grade, Lydia is doing well, her mother said.

"She's made a lot of gains, but she does have issues with low muscle tone," Rebekah said. "Her gross motor skills are somewhat delayed. She needs to work harder to keep up with kids who are her own age. ... She has some balance issues. When she falls, she falls hard."

The Priests, who have three other children, live in Lakeside, about a mile from the Judds. The families became acquainted when Laura Judd organized a "Shine a Light on NF" event at Enger Tower last year. The event was initiated nationwide by the Children's Tumor Foundation, which seeks to encourage research and raise awareness about the disorder.

Five NF families in Duluth now are connected and supporting each other. But probably 30 or so people in Duluth have the disorder, Judd said. She hopes not only to raise awareness of NF in the general public but to bring more of the affected families together.

That's a great help, Rebekah Priest said.

"For those of us where it's our children that are affected ... it's important to learn what we're facing," she said. "You meet good people, and you learn the strength that you have."

* What: Shine a light on NF event

* When: 6:30 to 8:30 p.m. Saturday

* Where: Enger Park

* What to expect: Meeting "NF heroes of Duluth," networking with the local NF community, lawn games and kids' activities

* Also: Enger Tower will be lit in blue and green after sunset.

* Admission: It's free. Donations will be accepted to support the Children's Tumor Foundation.

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