Mya Rodgers is almost like any other member of the 42-member senior graduating class this year from Notre Dame-Bishop Gibbons High School. She loves cheerleading, art, flag football, and watching movies. But some of those activities have been put on hold because her bones are so fragile. She also recently had a hip replacement. Rodgers has neurofibromatosis.
“I was six months old when I was diagnosed,” Rodgers said. “I had those café ole spots.”
Neurofibromatosis is a genetic disorder in which tumors grow on nerves throughout the body. It can be inherited and passed on. About two million people in the world — or about one in 3,000 people in the United States — have the disorder. There is no current cure. In Rodgers case, she has what is termed NF1, which is the most common level.
“I’ve met other people with NF1 and we all seem alike,” she said. “It gets worse as you get older.”
Rodgers is the only one in her family who is affected, which includes an older sister, two brothers and her parents.
“The doctors call it spontaneous mutation,” she said.
For several years, Rodgers was able to enjoy a certain amount of rough and tumble and running around like any kid. But waves of pain would come, sometimes without warning and other times something would set them off. Pain medications like Advil helped make it manageable, she said.
She also developed an attitude about her disorder.
“It upset me sometimes because I couldn’t do some things,” Rodgers said, “but I decided as I got older that I had a purpose by having it.”
Once she hit her freshman year at Notre Dame-Bishop Gibbons, she had her first major surgery at a hospital in New York City: lengthening her left leg, which was shorter than her right leg.
“They put two screws and a magnet rod in my leg. They took the rod out in my sophomore year,” Rodgers said.
Undeterred, she joined the cheerleading squad, which had eight to ten girls.
“I could do cartwheels but no flips and no lifting the other girls,” she said with a giggle. “I loved having the uniform.”
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She also started playing basketball and flag football, which doesn’t involve tackling. Because football is a passion in her house, she often watches the games with her father, she said. She particularly likes the New York Giants.
Life was moving along, she was doing well in school and began volunteering at the Ronald McDonald house in Albany where she became a teen ambassador. She discovered that talking with children who needed hospitalization was something she could connect with because she could relate to what they were going through, she said. She also helped fundraise for the organization and talked with families. All that changed in January 2020 when she began having extensive pain in her hip joints and had to stop cheerleading. Doctors discovered she had really bad hip dysplasia. A March surgery was to be scheduled when everything was put on hold because of the pandemic.
“I had a lot of pain and couldn’t sleep. It was really bad,” she said. “And not having teachers in person was hard. I had to adapt.”
Getting through the summer was tough, she said, but she spent a lot of time playing with her younger brother and a cousin. She also found relief from stress and boredom by drawing.
“I do cartoon characters or football players from my favorite teams,” she said. “I also learned to deal with the pain. I kept telling myself that the surgery would make everything better.”
In November she finally had her hip replacement and surgeons also took some tumors out and did some bone grafting. Rodgers feels much better now but she must be more cautious.
“I can’t stand on my feet for too long a time and I really miss [not being able to play] football a lot,” she said. “I have to be really careful. Bones are more fragile.”
After putting in about three hours a day to find scholarships for college and applying for some, Rodgers was accepted at Siena College — a seven-minute commute for her — where she hopes to resume her cheerleading. Her major will be psychology with a focus on forensics.
“My older brother used to watch those cop shows and I got interested and watched documentaries. I think forensics is really interesting,” she said.