Hillsboro therapist creates crawler for pediatric patient

Hillsboro therapist creates crawler for pediatric patient

For Cassidy Sanchez, there's almost nothing she won't do for her patients. The physical therapist at Emplify Health by Gundersen Hillsboro Hospital isn't afraid to take on the most medically complex cases. And if a patient needs a piece of equipment Sanchez doesn't have, she'll make sure they get it - even if it means inventing it from scratch.

One young couple was recently the beneficiary of Sanchez's determination and can-do attitude. It's the kind of support they never imagined they'd need, but it was essential for their three-year-old daughter, who was born with a condition so rare that the family uprooted their lives halfway across the country to find sufficient care - which ended up being near their adopted home in Hillsboro.

Looking for help

Maranda Richardson, along with her husband Sean, did all the right things during her pregnancy, and when their daughter Emerald was born in April 2023, the first four days of her life looked perfectly normal.

Then a newborn screening revealed a critical problem, so Emerald was rushed to a children's hospital in their home state of Arkansas, where she was eventually diagnosed with Glutaric Aciduria Type 1, or GA-1. It's a disease that leaves her body unable to produce the enzymes needed to break down protein - so essentially, she's allergic to it.

"She can have protein, but it's measured out by the grams. It's very precise," Richardson said. "Everything she gets goes on the gram scale."

If Emerald does ingest too much protein, it will build up and go to her brain as glutaric acid, which causes damage to her brain in the form of movement disorders or speech delay.

"Not only does she have to figure out how to walk and talk like a normal kid, but then she has to figure out how to get over the movement disorder," Richardson said. "One of the scariest things is, like with cerebral palsy, you have all these movement issues, usually it's only up from there. But for Emerald, we could have a crisis right now, and all the progress that we've gained would go right back down and we're starting from square one."

That prospect left the family with few options when they were in Arkansas. In fact, Emerald was the first child in Arkansas's history to be born with GA-1, so doctors there weren't adequately prepared to treat her.

"They would come in and poke on her so much that her feet looked like ground beef," Richardson said. "Her arms were all Band-Aids. They would take the maximum amount of blood from her each day trying to diagnose it."

So, when Emerald was just a year old, in hopes of finding better care, the couple sold everything they had and purchased a camper. They then headed north to Wisconsin where they had friends, staying on a piece of land near Hillsboro while seeking out healthcare providers who could help Emerald. Their first experience with Emplify Health by Gundersen Hillsboro Hospital came when Emerald was hospitalized with a cold.

"They put in so many referrals, it was amazing," Richardson said of that experience. "The treatment in Wisconsin is just so much better."

Solving a problem

Eventually, Emerald and her parents connected with Sanchez to begin physical therapy treatment, and from the beginning, working with her was different. Other providers in the past had been alarmed by Emerald's condition, but not Sanchez.

"She's never been intimidated by Emerald. She's never been scared to touch her or move her around where she needs to be," Richardson said of Sanchez. "For Cassidy, it's like a challenge. … It's somewhere she knows that she can help because there's not a lot of people out there."

Much of their work together focuses on crawling, something Emerald is learning to do with crawler devices the hospital has. The right-left coordination of crawling triggers something in Emerald, Richardson said, and for days after therapy, she's able to grab better, and she's actively trying to crawl.

"Having a crawler device is really important because it's activating that right brain-left brain for Emerald," she said.

But Sanchez noticed something about the crawlers - and many of the other pieces of equipment Emerald uses. Because of her length, the crawlers didn't support Emerald's head adequately, so they had to be modified.

Sanchez wasn't satisfied with using such an important device with a modification to it, so she decided to do something about it.

Therapist gets to work

Emerald had recently received a piece of equipment through the University of Wisconsin's Engineering Department, so knowing that team's capabilities, Sanchez reached out to the school hoping to find someone who could coordinate a crawler design that would work for Emerald. That led her to Peter Noonan, a graduate student in the engineering program.

Sanchez was already going to UW three days a month to complete a Capstone course, which made it easier to meet with Noonan to go over details of the project. Noonan assigned others on his team to develop ideas for how the crawler could look with the head support Sanchez was looking for.

"She's definitely getting better head control," Sanchez said of Emerald. "But it is really hard to crawl when your head is on the floor."

The team created several drawings, with Sanchez tweaking things along the way, until what was left was what she wanted: a device with the proper support that's expandable as the child grows.

"They took the entire rest of the school year (last year), then had another meeting with him in the fall, and then we finally get the demo in January," Sanchez said.

Emerald has been using the Coggan Crawler - Sanchez's maiden name - for two months, and already, it's a big improvement over what she was using. This new device that Sanchez created means a lot to Emerald and her parents.

"For families like mine, we'll try anything at whatever means," Richardson said. "It means a lot to have people like Cassidy who are willing to put in that work so there can be affordable products."

The Coggan Crawler is meant to be accessible to anyone. Most parts can be built with a 3D printer, and instructions on how to do it will be online in the next few months. The only pieces to purchase are ball bearings, PVC pipe, nuts and bolts. Velcro straps and a garden kneeler pad are optional amenities. In all, the total cost should be around $50 - as opposed to the hundreds of dollars commercial crawlers cost.

Eventually, each Emplify Health by Gundersen clinic will be supplied with one, and UW is considering using one of its build days to create more of them. Sanchez is hoping Children's Miracle Network will furnish a grant to fund several more.

When asked what motivated her to put in countless hours of work outside her regular job to fill this need for Emerald and other kids down the line, Sanchez says she isn't sure - but she says it with a lump in her throat.

"Over the years, I've really felt drawn to help those kiddos with complex needs," she said. "It's kind of where my identity is in what I can do to help others."

'Best of the best'

Sanchez, Richardson says, has done so much for her family. Aside from the crawler created with Emerald in mind, she goes to Kindred Kids in Columbus - a three-hour drive - to pick up supplies that Emerald could benefit from

"We have an awesome medical team, but most of them have become like family," Richardson says. "From every part of her medical team, she has the best of the best. It's beyond the care that you would expect.

"We love the people who care for Emerald," she added. "This hospital is really great."

And for Sanchez, she's motivated by Emerald's progress after a short time using the Coggan Crawler, and she's excited to think of the countless children it could help.

"I'm so excited about it, just the idea of being able to help in that critical window of growth before age 2, age 3, before they're able to walk," she said, adding that her goal isn't to make money on the idea, but just make it more widely accessible. "I think it's exciting to think of the families who will be helped by the idea."