Count me among those who had never heard of neurofibromatosis.
But Amanda Orth, whose 5-year-old daughter Audrey has this rare medical condition that causes tumors to grow along the nerves, is determined to bring all of us up to speed. And one way the Aurora mom is calling attention to NF – which is actually a group of complex genetic conditions – is by literally “shining a light” on it.
Phillips Park in Aurora is ablaze in colors of green and blue through May in recognition of National Neurofibromatosis Awareness Month. And now that you know why the park’s waterfall, visitors center and barn are glowing, you might also be asking how it came to be that a city park turned its lights on for a medical condition you’d never heard of.
Credit goes to a mom who is “putting everything into raising awareness,” said Eileen Hoesly, who as a friend and neighbor to Amanda and husband Matt has seen the impact neurofibromatosis has had on this “well-liked” Aurora family.
In addition to taking part in walks and other fundraising events, Orth worked with Aurora Ald. Ed Bugg, 9th Ward, to flip the switch on that light show at Phillips Park, said Hoesly.
“We hate this is happening to Audrey and other kids,” she told me, adding that throughout “the endless stress of doctor visits and daily medications,” the family continues to remain positive.
“Our kids need us, not only as parents but as advocates for them, no matter what battle they are facing,” Orth insisted. “If my story helps even one person struggling, then I know I’ve done my job.”
That story began when daughter Audrey, at 18 months, was diagnosed with NF1 – the most common type of the medical condition which often appears in childhood – after developing dozens of brown spots that turned out to be small benign tumors under the skin.
These tumors tend to grow when a child is developing because this form of neurofibromatosis can affect how the brain regulates hormones, Orth explained, noting there is no cure, only ways to manage the symptoms. In her daughter’s case that included a medical implant to help pause the onset of early puberty, which began at an unusually young age and caused Audrey’s body to develop more like an older child.
Audrey has several small tumors on her spine, one on her foot and one on the brain, which also causes epilepsy.
“Her body will produce tumors her whole life,” said Orth, adding that the risks of chemotherapy don’t outweigh the benefits.
Obviously, a small child going through so many challenges affects parents as well. Orth admits that in the fall of 2024 her “mental health started tanking,” so she took a leave of absence from her career to focus on “getting better,” which included an outpatient program tackling “the guilt, shame and trauma around this disease.”
Orth is courageously candid about this tough personal journey because “it shows others in similar situations that it’s OK to not be OK,” she insisted. “But it is important to get help. Our kids need us, not only as parents but as advocates for them, no matter what battle they are facing.”
After getting laid off from her job, Orth said she threw herself even more passionately into that advocacy role. She learned as much as she could about the medical condition, which has a 50% chance of being passed from parent to child, though not in their family’s case. And she became involved with two support and research groups: the Children’s Tumor Foundation and NF Midwest, which sponsor family-friendly fundraising events like the June 6 Walk4NF that will start around 8:30 a.m. June 6 at the Riverwalk’s Grand Pavilion in Naperville.
The goal is to not only raise funds so that someday a cure can be found, but also awareness. The Children’s Tumor Foundation began the “Shine a Light on NF” campaign in 2014, encouraging landmarks, bridges, stadiums and other buildings around the world to light up in blue and green during May.
This is the third year the Phillips Park waterfall has been lit, but the first for the visitors center and barn. Also, at Tuesday’s City Council meeting, Aurora Mayor John Laesch recognized Orth’s crusade and this campaign with a proclamation declaring May 17 as NF Awareness Day in Aurora.
“We are making a difference,” said Orth, giving plenty of credit to Audrey, who has “been in and out of hospitals” since she was a toddler but still manages to keep an upbeat attitude, even when “someone thinks she’s a boy because ‘girls can’t be that big.’”
“It’s all she knows … she’s a fighter. Audrey taught me a lot about myself, how to not just be a better person but a stronger one,” added her mother. “I’m proud of who I’ve become in this journey, but it took several years to get here.
“I won’t lie and say it’s been easy, but knowing we are fighting a battle for our kids brings some light to the end of the darkness that is NF.”
dcrosby@tribpub.com
