Mom’s colorful campaign makes 5-year-old daughter’s illness the talk of the town
Nearly a year after her youngest child was diagnosed with neurofibromatosis (NF), Kara Fisher was looking for a way to bring attention to the little-known disorder.
She jokes that a hare-brained idea popped into her mind: Why not use her hair to start conversations about NF?
“I thought that if I dyed a streak of my hair blue, that would get some attention,” said Fisher, a lifelong Jefferson County resident who lives in Middleway with her husband Donnie, their 5-year-old daughter Khloe – whose lifelong nickname is “Bean” – and sons Ethan and Aiden.
“People might wonder what would make a mom in her 30s do that. They’d ask me about it and I’d get to tell them about NF and how important it is that there’s research so that we find a cure.”
There are three types of NF that together affect more than 2 million people worldwide, making the disorder more common than cystic fibrosis, Duchenne-type muscular dystrophy and Huntington’s Disease combined.
“I never expect anyone to know what NF is,” Fisher said. “We know that when we bring it up, it’s going to be brand new to people.”
Fisher’s homegrown awareness project quickly took root. Within hours of having her hair dyed by her longtime stylist Shannon Ballenger at Head Hunters in Ranson, salon manager Sharae White had expanded on Fisher’s idea, creating a “Go Blue for Bean” campaign.
“It was just incredible,” she said. “By the time I came back that afternoon so that Khloe could get her hair dyed, there were people lined up to go blue, they’d created a Facebook page and a flyer. Stylists at other salons were on board. It was off and running.”
Throughout May – officially Neurofibromatosis Awareness Month – anyone can make an appointment at Head Hunters or other area salons taking part and for $10 can get a blue streak for $10. All proceeds go to the leading neurofibromatosis research institution, the Children’s Tumor Foundation.
Now instead of just Fisher’s hair prompting conversations about NF, many others would be boosting knowledge of the condition, too.
Khloe’s dad and brothers, aunts, cousins, preschool teacher, classmates, friends and even complete strangers have gone blue for Bean. Now the campaign has grown to include other hair salons across Jefferson County and in Berkely County, too.
For Khloe, seeing so many people join in the cause has been a spirit booster. “Whenever we hear about someone else who’s gone blue, she says ‘For me?’ It’s been wonderful for her to know there are so many people who want to understand what she’s dealing with and want to support her.”
The Fishers say they feel grateful that Khloe’s health is so good now. For now, she continues to be monitored by neurologists in D.C. with thorough assessments every six months, but in all other respects, she is a typical 5-year-old who splits her days between preschool and playing with friends, brothers and two pet dogs.
“We’re so grateful – there are so many families dealing with NF who have it so much worse,” explains Donnie Fisher, a Jefferson County native who works in real estate. “We are grateful every day and try to not worry about what may be ahead.”
Certainties about NF are few, Kara Fisher said. “What they say is that the only thing predictable is the unpredictability,” she said. “We just don’t know what the future holds and because there’s no cure, that isn’t easy.”
But the Fishers say they’re delighted that a small idea to shine a spotlight on NF has grown. The “Go Blue for Bean” may become a May tradition – and officials with the Children’s Tumor Foundation have asked for details with the possibility ever anticipated and it’s doubly good because we’re not only seeing awareness of the disease rising but all the money that’s being raised with bring us that much closer to a cure.”