Mari is at a routine doctor’s appointment at Gillette Children’s Specialty Healthcare and it just so happens that this room has a set of parallel bars over in the corner. Within seconds and while completely ignoring the conversation her parents are having with her specialist, she’s hanging from the bars upside down.
Often there are small moments that can tell you a lot about who someone is. This one of them.
Mari is 7 years old and she’s a bit shy when you first meet her, but other than that, she’s fearless.
With her shock of blonde hair blowing in the wind, she laughs while flying down the trails on her mountain bike and has aspirations to conquer the monkey bars at her local playground. These athletic feats become all the more impressive when you consider the fact that Mari was born missing nearly all of the fingers on her right hand.
“We got the news during one of my preliminary ultrasounds that Mari was definitely going to be a leftie,” her mother Andrea recounts. “It was our first pregnancy and it was certainly a surprise to us. We weren’t quite sure what that would mean for her as she got older.”
Luckily, as Mari grew, she and her family were connected with Michelle Hall, a certified prosthetist orthotist at Gillette Children’s in St. Paul, Minnesota.
Finding the Right Fit
“When working with patients who have hand or other limb differences, I think some people might assume that there’s some type of manual or standard routine to designing prostheses or orthoses for them to use,” Michelle says. “That’s certainly not the case in the majority of instances. Everyone is different and many of our patients have a variety of needs that they will need this prosthesis to be able to satisfy.”
In Mari’s case, this meant looking for a prosthesis design that could help her complete daily activities like getting dressed or eating, as well as allow her to do other activities like riding a bike or climbing the monkey bars. Michelle settled on a one-size-fits-most approach, and designed a prosthesis that would come with a variety of attachments to assist Mari in doing nearly all of these things.
“When you go into the Orthotics, Prosthetics and Seating (OPS) department at Gillette, it’s really wild,” Mari’s father, Josh says. “It’s like one moment you’re in a hospital and then you go through a door and you’re in the middle of a workshop filled with these incredibly smart, creative people. We knew right away that we had come to the right place to find solutions for our daughter, and we’re really happy with the prosthesis Michelle came up with.”
Mari’s prosthesis looks like a cuff that goes around her forearm, and it has three interchangeable attachments to assist her in doing daily activities.
It’s More Than Just the Medicine
While there’s seemingly very little the staff in the OPS department at Gillette can’t design and make on-site, having it covered by insurance can be a different matter. Very often insurance will cover a prosthesis for daily use, but not cover a second one for sports activities or hobbies. This can put parents and families in a difficult situation.
“Our insurance covered the prosthesis with one attachment for everyday tasks, but there were two other attachments that would help her ride a bike and do other active things that weren’t covered. I guess riding a bike isn’t a medical necessity, so we were looking at paying something like $4000 out of pocket,” Josh says. “So part of you is thinking, it’s an awful lot of money. But of course, you want your child to be able to participate in everything they’re capable of doing. We were in a tough spot.”
Like she so often does, Michelle found a solution.
“We didn’t know about it, but Gillette Children's Foundation has a fund specifically for adaptive sports equipment,” Andrea says. “She put in the request and got the additional attachments fully covered. It was really incredible because we were stuck trying to figure out what to do and Michelle just figured it out for us. We hadn’t even asked.”
Armed with her new attachments for activities, the sky is the limit for Mari. She’s still ferociously tearing up her local trails on her bike near her home, and now she’s tackling swimming lessons. The monkey bars will likely be the next challenge. Either way, her parents are very appreciative of all the help Gillette and Michelle specifically, have provided.
“When you have a child who has a physically visible difference or disability, you’re bound to get some questions and looks from other people. Some are appreciated. Some, not so much,” Josh says. “I think the thing that really struck me the first time we went to Gillette is that no one gave Mari’s hand a second look. They saw her for the vibrant, beautiful girl that she is. It was the same with Michelle. The first time we met her she reached out to shake Mari’s left hand. Some people struggle in these situations, but it was like she understood our daughter immediately. She didn’t have to ask.”
On Saturday, Sept. 12, Mari and her family will be participating in Gillette's Walk & Roll Family Fun Day. Join her by supporting the event with a donation or creating your own team today!