Hailey Dawson likes to be photographed with her 3D-printed hand front and center. Sometimes she curls it into a fist and flexes her biceps. Other times she keeps it flat as a pancake, elbow bent into a classic dab.
However she holds it, the point is that it’s there and she wants you to look at it.
She’s gotten baseball fans around the country to pay attention to it, too, by throwing the first pitch at every MLB stadium to raise awareness of the need for affordable prosthetics. After she pitches at Angel Stadium in Anaheim on Sunday afternoon, the 30th and last stadium on her list, she will complete what her family is calling her Journey to 30.
When Hailey was born, her right hand came out different than the left. The right had a pinky and a thumb, but the three fingers in the middle were missing — her “nubbins” as her family calls them. Poland syndrome, the genetic condition she was born with, inhibits the development of a chest muscle. This makes the affected side of the body smaller and in some cases, causes abnormalities in an individual’s fingers.
After her tour of baseball stadiums, which started in 2015, Hailey is looking towards the future. The eight-year-old says she’s ready for some vacation.
Her mom bursted her bubble on those vacation plans, though, during a phone call with Mashable in August.
“You still have school,” Yong Dawson, Hailey’s mom said. The third-grader grunted audibly in response.
Journey to 30
Hailey’s journey began when she threw the first pitch at a Baltimore Orioles baseball game. After tossing the ball to her favorite player, Manny Machado, the two celebrated with a fist bump. The experience made her so happy, her mom wrote to a second team to see if she could do it all over again, this time with the Washington Nationals. It took a little while for it to be arranged, but she eventually got an in for Game 4 of the 2017 World Series Game.
“Hailey’s hope was to visit all the ballparks and throw a strike. To have fun,” Yong said. “For me, it was to spread the awareness of Poland syndrome and how easily accessible the robotic hand is.”
Now that the dream has come true, the two plan to continue to use Hailey’s online community to make prosthetics affordable and accessible for those who need them.
Making a robotic hand
A prosthetic hand can cost anywhere from $5,000 to $20,000. More sophisticated prosthetics, such as myoelectric arms that are controlled by a person’s muscle movements, have price tags of upwards of $100,000.
For families with kids like Hailey, that cost increases over time. As children grow, they’ll need modifications to or replacements for their initial prosthetic. Physical therapists and regular wear is similarly expensive. Unfortunately, most health insurance companies restrict how much a patient can spend on their devices.
In 2013, Yong was scrolling through Facebook when she spotted an article about a 3D-printed hand that gave a 5-year old boy finger mobility. The materials to make it cost $150. There was even a link with instructions.
She took the information and called the engineering department at University of Nevada in Las Vegas. Experts there used the site’s blueprint, but tweaked it to fit Hailey’s hand.
“We simply thought that we could scale it down to fit her hand. This did not work and we found that we have to do multiple adjustments to fit her hand properly,” the engineering college’s dean of research, Mohamed Trabia said.
The 3D-printed materials brought down the price, that’s for sure, but the driving factor behind this particular hand’s affordability is the family’s partnership with UNLV.
“The material cost alone may be misleading,” Trabia pointed out. “Since the project is voluntary, we depend on our students’ generosity with their time.”
In addition to providing a 3D printer, the university’s graduate students have worked tirelessly — and without pay — to adjust the original model to fit Hailey’s hand. Maria Geraldi, the main engineering student behind the project, spent months creating an adjustable thumb to improve Hailey’s grip.
When Hailey tried on a 3D-printed hand for the first time several years ago, her four-year old face looked skeptical as an occupational therapist handed her a grocery bag. Moments later, Hailey was gleefully using the 3D technology to carry the bag back and forth across the room.
For others looking to purchase a robotic hand like Hailey’s, Yong suggests getting in touch with Enabling The Future, a nonprofit that connects families in need of affordable prosthetics to people with 3D printers.
But finding a 3D printer is just step one of many. One must also find a knowledgeable person to refine the device. For this, both Yong and Trabia advise contacting a university.
“I think that any university would see this as a unique learning opportunity for their engineering students,” Trabia said.
In addition to raising awareness, the mother-daughter duo are huge advocates of self-love. In this way, Journey to 30 was also a campaign on self-acceptance.
Difference as strength
Hailey was taught growing up to be open about her genetic condition. If someone asked about it or stared too long, her parents encouraged her to feel comfortable answering questions.
Indeed, Hailey finds it funny when people gawk at it.
“People stare at it all the time,” Hailey said. Then she sat up and pretended that someone was looking at her hand, “and I’m just like ‘lalalalalala.’”
Over the course of the last three years, Hailey and her mother have used social media accounts to spread positive messages about differences. Using her Twitter, Facebook, and Instagram accounts, the two make clear her story is not a sad one.
“Strength lies in differences not in similarities” one post reads. Another says, “Self confidence is the best outfit. Rock it and own it!”
A book you say?
Yong and Hailey hope to write a book one day about all the adventures they’ve had over the course of Journey to 30. They have not made official plans yet, but Hailey appears up to the task. She has already proven herself to be an excellent writer — just check out the missive below posted on Instagram.
After their long journey together, Yong sees her daughter’s story as a lesson in tenacity.
“The Journey to 30 means that an 8-year-old born with a birth defect can do what no one else ever has. All it takes is the courage to ask and the persistence to keep pushing through the challenges,” she said.