MOORHEAD — It's largely unheard of and without a cure, but families here are hopeful for a day without neurofibromatosis.
The genetic disorder known as NF causes tumors to develop on nerves throughout the body.
For the Jahner family, as many as six generations have been diagnosed with NF, leading to non-cancerous tumors in the brain, eyes and ears.
Some have experienced deafness or blindness. Others tragically died from the disorder that still doesn't have a cure today.
NF has a 50% chance of being passed on. The symptoms and severity differ, even among members of the same family.
Six-year-old Jacob Jahner has NF, but his brother, Jason, 8, doesn't. Their little sister, Jessalynn, 3, was diagnosed with NF, but her symptoms are mild and unnoticeable compared to Jacob's.
"We found out when he was 6 months old," said his mother, Jessica Jahner. "He was not meeting his milestones at the time. He couldn't hold up his head, it was relatively large, and I guess it probably still is, but he's my son, so I don't see anything but perfect."
Doctors discovered a benign optic tumor that, after years of close monitoring and visiting specialists, has stabilized. He wears glasses and has developmental delays, a short stature and expressive language delays.
As Jessica lists off Jacob's diagnosis, big brother Jason chimes in with the perfect pronunciation of neurofibromatosis.
It's a mouthful (noor-oh-fahy-broh-muh-'TOH-sis), and while most are completely unaware of it, Jason understands as much as an 8-year-old can.
He gently kisses Jessalynn on the forehead and giggles with Jacob at the kitchen table. The brothers are heading to back to school, and their little sister wishes she was, too.
"The scary thing for me is, even with all the research going on, I have no idea up the road what could possibly happen," Jessica said. "He could develop more nerve-ending tumors. She could (and) she's perfectly healthy... the scary part is not knowing.
"There's no way to know how it's going to manifest next, so while she is fine now, in 13 years she could end up with a tumor on her brain," Jessica added. "It's so unpredictable. If we could find a cure, that would be super awesome."
Every September, the Jahner family participates in the Shine a Light on NF Walk to raise awareness and funds for NF research.
This year's event runs from noon to 3 p.m. Sunday, Sept. 8, at Moorhead's Gooseberry Park, 100 22nd Ave. S. It will feature free games and food along with a raffle and fundraiser.
Walking along with the Janher children will be their father, Jory; grandma, Kim Whitson Hass; and great-grandma, Toni Benson Whitson Lee.
All three adults have NF, but their symptoms are manageable. Hass has hearing loss in her right ear and, like her mother, neurofibromas on their skin.
Lee lost two of her children to NF while they were in their 30s. Hass has four children and two have NF.
The disorder traces back to Lee's great-grandmother or her father's side. But back then they didn't know it was NF.
Dr. Jau-Shin Lou, a Sanford Health neurologist, said in his 25 years of practice, he's only had about four or five patients with neurofibromatosis, but none in the past six years with Sanford. That illustrates just how rare the disorder is.
NF is more prevalent than cystic fibrosis, muscular dystrophy and Huntington's disease combined, according to the Children's Tumor Foundation, but it occurs in 1 in 3,000 people.
Though incurable now, Lou said there are some effective treatments along with close monitoring by doctors. It's important to bring awareness to the issue, he said, as more is known about the genetic nature of the disorder and researchers continue working to find a cure.
"Don't give up hope," he said. "Help research and find a cure, no matter how far away it is."
If you go
What: Shine a Light on NF Walk to raise awareness and funds for neurofibromatosis research
When: noon to 3 p.m. Sunday, Sept. 8
Where: Gooseberry Park, 100 22nd Ave. S., Moorhead