In Conor McManus’ nine short years of life so far, he has endured three craniotomies, lost his right eye and dealt with disfigurement and averaged two major, invasive head surgeries a year in his ongoing battle against neurofibromatosis, a genetic disorder that causes tumors in children.
The tumors are typically benign, but can be cancerous or be invasive to the degree that the tumors, which can cause an array of medical problems, are treated like cancer.
And yet his mother, Miranda McManus of James Island, describes her youngest son with blond surfer boy locks as a “completely happy, normal kid.”
“Conor plays baseball and basketball. He surfs. And he’d play football if we let him,” says McManus, an adjunct college biology professor at the College of Charleston who lives on James Island.
She adds, in fact, that Conor routinely shows ways of “owning” the condition he has been dealt. For Halloween, he dressed up as boxer who lost his right eye in a fight. Images of his costume spurred researchers to look into why some people approach disease and disorders with humor and positivity.
So it’s probably not a surprise that neither Conor nor his parents or siblings, think running a mile in your underwear in the middle of February is neither challenging nor shameful, especially when it brings awareness of neurofibromatosis, or NF, and raises funds for The Children’s Tumor Foundation.
The foundation is a Charity Navigator 4-Star charity that prides itself on efficiency, spending 82.4 percent of its revenue on program expenses and less than 8 percent on administrative costs.
Conor, an inspiration to many who know him or meet him, will be the master of ceremonies for the second annual Cupid’s Undie Run on Valentine’s Day on Folly Beach. The event originated in Washington, D.C., in 2010 and has grown to 38 cities in the United States and Australia.
Last year, 30 events raised $2.8 million. The Charleston area’s inaugural Undie Run on Folly had more than 260 participants and raised $29,000, according to local race director Kryssy Andrash.
And while Andrash says registrations are down slightly so far this winter, fundraising is up and she’s hoping to best last year’s numbers in the coming weeks.
Andrash thinks Conor is the perfect ambassador for the Undie Run, which people often don’t understand that the event transcends running in your underwear. She recalls meeting Conor for the first time and that he placed a sticker on the right lens of her sunglasses.
“That’s how I do it (see) every day,” says Andrash, adding many people don’t realize how much the children who have NF and their families have to endure.
She adds that Conor wanted to run in the event, but that the organization can’t allow that. But he will likely ride in a golf cart in front of the runners or cheer them on from the Folly pier.
Among the people Conor has touched is Melissa Engdahl, a volunteer at Camp Happy Days since 2002.
“Conor has been one of our campers at Camp Happy Days for the past few years,” says Engdahl, noting that some children show no signs of cancer or other problems because surgery scars and radiation tattoos can be hidden with clothes.
“Conor is not able to hide what (neurofibromatosis) has done and continues to do his body. Most people, regardless of age, would let the excruciating pain of cancer, repetitive surgeries and these type of changes to their physical appearance negatively affect their personality and outlook on life.”
Instead, Engdahl says, Conor is positive and humorous. “He has taught me personally to not take life so seriously, to pray harder and teach my own child and others to not judge people on their looks.”
Reach David Quick at 937-5516.