Franklin—Whitney Wright just raised $3500 for Cycle for CMT, and last weekend she joined 300 others at the event to raise awareness and funds for those affected by Charcot-Marie-Tooth disease.
Wright, who is now 17, was diagnosed with CMT at the tender age of 18 months.
CMT is a neurological disorder that affects the nerves that connect the brain and spinal cord to the motor and sensory muscles.
As an affected person grows older, the disease tends to get worse, inhibiting the body’s ability to build muscle.
Although Wright has lived with the CMT for as long as she can remember, she has done her best to participate in the activities she enjoys.
A true lover of athletics, Wright spent her elementary years playing softball and basketball at the Franklin Central School.
“I enjoyed basketball the most,” said Wright, smiling. “I learned that even though it was hard–don’t give up on it!”
Wright spoke with gratitude about those she played with and competed against.
“People were always understanding and that was really nice,” said Wright.
Wright played basketball until the fifth grade, and when playing was no longer an option she decided to be the team manager. She’s held that role on teams ever since.
“All my friends played, so being the manager gave me a chance to be with them,” said Wright.
From 2015 to 2017 the Enosburg boys’ varsity basketball team went to Barre three times, securing the state championship in 2017. Wright was there for all three trips, and she cherishes those memories.
“I really enjoyed going to Barre, even though the last time I went I had just had hip surgery. I wasn’t 18, so I couldn’t do the book, but I still felt like I was part of the team,” explained Wright.
Last year, Wright managed the Enosburg girl’s varsity basketball team under head coach Gary Geddes.
“Working with the girls’ team is different than working with the boys’ team,” said Wright with a chuckle. “the boys’ coach, Matt Luneau, wanted to know what was going on right away. Gary is more laid back, so that was a big difference.”
The involvement with the athletic teams has kept Wright connected with her peers and given her some of her favorite high school memories.
“I like homecoming weekend, Spirit Week, and the themed sports games,” said Wright.
Wright can’t say for sure why she loves the game of basketball, but she credits her mom, Katie, for some of it.
“My mom and all my aunts played basketball, so that helped. My mom also coached my teams when I was young. It was also the easiest sport for me to understand, and it was warm!” said Wright, laughing.
Wright had wise words for those who can still lace up their sneakers and dribble a ball.
“Don’t take it for granted, enjoy your time with the sport and make the most of it!” said Wright.
Wright is very grateful to the people in her life who keep an eye out for her–her friends at Enosburg High School, the coaches who’ve taken her on as a manger, and her own family.
“My mom has brought me to so many doctors,” said Wright with a thoughtful smile, “and my siblings are so helpful. They never think of me as any different than they are.”
Out of all the doctors and specialists Wright has seen, Dr. Emily Dodwell, a pediatric orthopedic specialist in New York City and her colleague, Dr. Ernest Sink, made the biggest difference in her life.
“When we went to New York City I saw Dr. Dodwell, who was supposed to work on my feet, but she noticed that the problem I was having was in my hips.”
Dr. Sink, a pediatric orthopedic specialist, performed Wright’s first hip surgery in the winter of 2017. By Easter, Wright could begin to bear weight on her leg.
“I felt the difference between the hip that I’d had surgery on and the one that I hadn’t. I knew right away that I needed to get the other one done. I couldn’t believe I’d had that pain my whole life and just lived with it.”
On Halloween of the same year, she had her second hip repaired.
“I’m not in pain anymore!” said Wright. “I didn’t have any cartilage between the bones, so they were rubbing on each other. Now they don’t rub anymore, and that’s a big help!”
Wright’s gratitude for the good things she can experience in life is obvious in her conversation and her beautiful smile.
“I always remember that there’s someone out there that has it worse than I do. I’m always looking to stay positive and remind myself that it’s not the end of the world!” said Wright, candidly.
Keeping a positive attitude in illness isn’t easy for anyone, and Wright has symptoms that affect her every day.
“The worst thing for me is that I’m really off balance. That makes it difficult to get out places,” explained Wright.
Wright also has Retinitis Pigmentosa, which affects the rods and cones of the eyes. At night, she is blind and during the day she can’t see fine detail.
“According to science, there’s no link between CMT and Retinitis Pigmentosa, but I’ve talked with a lot of people online that deal with this just like I do,” said Wright.
Things haven’t been all bad; Wright also shared some of her accomplishments.
“I get tired easily, so when I wake up and feel motivated that’s always great. I swim in the pool for half an hour on most days, but the days I can push myself to swim for an hour feels pretty good!” said Wright.
Before becoming involved in Cycle for CMT, Wright had only met others with CMT on Facebook.
On Sunday, Wright brought her scooter to Charlotte, VT, to join the walk. It was the first time she’d ever taken part in an event with others who have CMT.
“It inspired me and definitely made me want to keep attending. I met a girl with the same type of CMT as mine. It was super cool meeting her because I finally met somebody who knew what I was going through,” said Wright.
Wright also met some of her peers who have attended other events geared for those with CMT.
“There’s a camp that goes on once a year called Camp Footprint. It’s for kids with CMT. You participate in all the activities that normal camps do but this one is more adaptive,” said Wright.
“The whole event gave me great hope for the future; it makes me confident that I will have the resources I need. In all, $200,000 was raised this year, and over the past six years they’ve raised over one million dollars!”
Life often brings us great opportunities from unexpected places, and the Cycle for CMT was one of those experiences for Wright. She first heard about the event at the Franklin County Field Days, thanks to a chance meeting and a hat.
George Ouellette, a local photographer, was at the Field Days; Wright’s aunt Kelly Callan noticed that he was wearing a Cycle for CMT hat.
“He told us that his sister Elizabeth was on the board of directors for the national CMT Association,” said Wright, “and her son has CMT, so she knows about it firsthand.”
Wright contacted Elizabeth and the two hit it off immediately. Wright began raising money and preparing to take place in the walk, where she had the opportunity to meet Elizabeth in person.
The official Cycle for CMT may be over for the year, but the organization takes donations year-round, all with the hope of finding a cure for people like Whitney.
“If you’re able to donate, please consider it,” said Wright. “It’s going to help so many people when a cure is found.”