There’s something thrilling about a softball game, the sweet smell of grass, the moment of anticipation right before the pitch as the body’s systems - from the brain and heart to muscles and bones – gear up for play.
This is the game that Charlie Duffy, age 16, of Phoenix, has loved with a burning fire since before she can remember. She even took her first steps in life on a softball field where her older sister was playing.
But from day one, the odds that Charlie would ever play softball were stacked against her.
Charlie has cerebral palsy (CP), a condition that affects movement and muscle tone with symptoms ranging from difficulty controlling the body to pain and involuntary movement. CP is the most common lifelong physical disability impacting one million people in the US and one in every 325 children.
Diagnosed with CP when she was three years old, Charlie couldn’t skip, run or balance like other children. In her young life, she has had more than 20 surgeries, starting with botox injections to relax her ankle at the age of four to more recent surgeries to lengthen her bones and tendons.
Charlie wasn’t going to let that stand in her way of playing softball.
“I knew that some things were going to be harder for me, but I wasn't going to tell my coaches, ‘I can't do this right now,’” says Charlie, who now plays for her high school team and a club team called the Killer Bees. “I found a way to adapt so I could do better at it.”
Charlie knows her CP is referred to as a disability in the medical community, but she doesn't think of it like that.
“I just think it's a challenge,” Charlie explains. “It's an obstacle in my path, it's not my path. It's not my whole story, it's just one chapter.”
When Charlie’s softball team plays, her grandfather, Bill “Pop” Duffy, is there in the stands, cheering as loudly as he can. Charlie says she loves Pop’s optimism, energy, jokes and infectious laughter.
“He's the loudest person at my games,” Charlie says. “And you can hear him from far away, and everybody knows distinctly he's the one screaming.”
Bill, who is 70 and a retired US Service member, says his 16-year-old granddaughter is more than just his role model.
“She is my hero,” Bill says. “I've never seen anybody work so hard to overcome an adversity like that. She has knocked it out of the park.”
She is my hero. I've never seen anybody work so hard to overcome an adversity like that. She has knocked it out of the park.
A couple of times a week, Bill drives Charlie 45 minutes each way to her physical therapy appointments at United Cerebral Palsy (UCP) of Central Arizona, an organization providing therapy and resources for families. Its national umbrella organization, United Cerebral Palsy, was founded by parents of children with CP. Currently, UCP is focused on the goal of improving the nation’s early CP detection in young children so treatment can begin as soon as possible.
Charlie has been going to UCP of Central Arizona since her diagnosis, and between the ages of six and nine, Charlie went to therapy at UCP four times a week for two hours.
“It was the best two hours of my life, every single day,” Charlie says.
Charlie says UCP offered her vital support and encouragement, not only for managing her CP, but for accomplishing her softball goals.
“When I was at UCP, it never really mattered that I couldn’t do it,” Charlie explains. “It was more about ‘How can I do it? How can I adapt to do it how my body wants me to do it?”
When I was at UCP, it never really mattered that I couldn’t do it. It was more about "How can I do it? How can I adapt to do it how my body wants me to do it?”
Kentay Garvin, the CEO of UCP of Central Arizona, says people like Charlie inspire his work at his organization, which serves about 1,000 people a year in the region.
“It’s a story of understanding what’s in the community, meeting those community needs, understanding how technology is advancing and helping, and bringing everything you have to help deliver those services,” Kentay explains.
As one part of their broad work to support CP families, UCP integrates new technologies for therapy as well as mobility. UCP has partnered with Waymo, an autonomous driving technology company operating a fully autonomous ride-hailing service in Phoenix, to explore how the technology could bring independence and freedom of mobility to those with CP, from those who can’t drive to those who can.
As someone who works on the frontier of mobility technology, he says he’s excited about how autonomous driving technology like Waymo’s could help expand independence and enrich human experiences.
“Waymo's a game changer and autonomous vehicles are a game changer.”
Bill, who took a Waymo ride with Charlie, says that autonomous driving technology also offers the promise of safety. Bill recalls two specific things about his ride.
“One is that [Waymo] obeyed the traffic laws to a T, and the second was that I thought that with all the equipment that's on that car, I don't know how much more safe you could be,” Bill says. “The ability to feel safe with your child in that vehicle, I think hands down that would be the way to go, as opposed to being with a [human] driver.”
Waymo is designed to obey traffic laws and employs a full suite of sensors and radars to identify other road users, predict what they may do next, and make the safest driving decisions given the myriad real-time data inputs from all directions.
Charlie says she sees how the technology could benefit people like her. While Charlie will get her driver’s license sometime soon, there may be some days in the future when she isn’t able to drive due to pain or just wants to rest.
“I think Waymo will help a lot of people be independent, especially for going to hospital visits,” Charlie says, adding that it could help a lot of families, especially those with kids who need 24/7 care. “Their parents can be with them in the backseat and just be there for them.”
Charlie adds that the need for independence is universal.
“I think being independent is a key thing in anybody's life,” Charlie says. “You can learn and grow. You make mistakes and you learn from those mistakes.”
As an ambassador for UCP, Charlie says she is looking forward to continuing to share her story with the world. She wants others, especially parents of a child who is newly diagnosed with CP, to focus on the best-case scenario for their child.
“People always look at the worst-case scenario of the title cerebral palsy,” Charlie says. “There's so many things that kids with cerebral palsy can do, and there's so much new technology that we have now. It's awesome.”
People always look at the worst-case scenario of the title cerebral palsy. There's so many things that kids with cerebral palsy can do, and there's so much new technology that we have now. It's awesome.