‘Going for it’ with a congenital hand difference

“People ask me if it’s harder to do certain things, and I always tell them, ‘I don’t know, this is all I’ve ever had.’” Despite being born with symbrachydactyly — a condition in which the middle three fingers of her left hand never fully developed — 12-year-old Ashley makes most things look easy. She runs cross-country, plays basketball and even competes on the uneven bars in gymnastics, all with a hand that sets her apart from most kids her age.

“We talk a lot about how everyone has differences,” says her mom, Juli. “I told her when she was little that her hand won’t ever be the same as others, but we can adjust and make compensations so she can do the things she wants to do.” And what does Ashley want to do? The answer to that seems to be almost everything.

From Denver to Boston

Ever since Ashley was 10 months old, her family has travelled from their home in Denver to Boston Children’s Orthopedics and Sports Medicine Center to see Orthopedic Surgeon-in-Chief Dr. Peter Waters.

“I’ve worked in health care for 20 years, so when we first began getting opinions from doctors in Denver, I knew I just didn’t like what I was hearing,” Juli recalls. “I ended up reading a lot of literature on Ashley’s condition and kept stumbling across the names Dr. Waters and Boston Children’s.”

Juli remembers their first visit from Denver with complete clarity. Waters walked up to Ashley and held out a pencil to her left hand. She quickly grabbed it, causing him to smile and say, “Young lady, you’re going to do great things.”

“Right then, we knew he was the doctor we’d been looking for,” says Juli. “And ever since then we’ve had quite the bond with him.” That bond has lasted through multiple visits from Denver and two surgeries — which helped improve the function of Ashley’s left hand. It even held strong through years of Broncos-Patriots banter between the family and their physician. Ashley herself participated as a Broncos junior cheerleader, cheering on the players at Mile High Stadium. “Dr. Waters calls her his ‘Bronco Girl,’” Juli laughs.

Competing at a higher level

As Ashley grew, she became more and more active, and never stopped believing in her abilities. This mindset would lead her to gymnastics, an inevitable outcome stemming from her tireless efforts on the monkey bars at the local playground. “I remember one day she had blisters all over her hands because she was so determined to figure out how to conquer those monkey bars – I should’ve known gymnastics was coming,” Juli says.

Ashley began in recreational classes and continued getting better until she was moved up to the team. But as she started competing at a higher level and doing faster and stronger movements on the bars, she began having trouble holding on with her left hand. Her parents would wince while watching her lose her grip and fly off the bars. “We reached out to Dr. Waters for some guidance and asked if anyone had ever built a grip for gymnastics,” says Juli. “He connected us with the Hanger Group, and they built her a one-of-a-kind gymnastic grip to help her hang on to the bar.”

This year, Ashley will be competing at an even higher level in gymnastics. “I just like flipping and challenging myself,” she says. “I feel like it could all go wrong, but I know how to do it. I just like going for it.”

Not just helping herself

Ashley also wants to give other children with congenital hand differences the opportunity to experience the thrills of play and competition. She recently designed her own prosthetic named “All You Need is a Helping Hand” to help kids with congenital hand differences play on the playground. Ashley entered her project into a science fair in Denver, where — coincidentally — members of the Hanger Group were her mentors for the project. As of now, Ashley and her project have advanced to the Regional Science Fair.

Rather than holding her back or giving her an excuse to achieve less, Ashley’s condition has inspired her to work harder and help others along the way. It’s also had a positive impact on her family. “I think it’s helped our whole family become more aware and more compassionate of people with differences,” says Juli. “And for Ashley, I think learning to adapt to doing things in different ways has allowed her to become more confident in herself.”

Far removed from the first day they walked into Boston Children’s, unsure of what the future held for their daughter, the family has grown together and sees a future that has no limitations.

“My job as a surgeon was to give Ashley the maximum potential to be able to do as much as possible,” explains Dr. Waters. “For her parents, their job was to support and raise her so that she could expand that potential. I think you can see in Ashley that they’ve done an incredible job.”

Ashley will continue to compete in gymnastics through high school, and hopefully in college as well. For a future career, she wants to be a neonatal nurse, since she “just really likes babies.” Though her aspirations may be lofty, if you have any doubt in her ability to achieve them, you just don’t know Ashley.

Learn more about Boston Children’s Hand & Orthopedic Upper Extremity Program.