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Health + Wellness Wellness

A Revolutionary Helping Hand for Kids with Missing Limbs

Published August 3, 2018 by

The Variety Myoelectric Clinic at Beaumont offers kids with missing limbs the opportunity to do any two-handed tasks.

By Susan Peck

Photography by Viviana Pernot

Natalie Freeburn calls it the best-kept secret they were blessed to find. A program, sponsored by Variety the Children’s Charity of Detroit, enhanced the quality of life for her 7-year-old daughter Addisen and hundreds of children with upper limb deficiencies due to trauma, disease or congenital conditions.

While out to dinner with the family several years ago, Freeburn, a Saline resident, saw a little girl with a prosthetic hand like Addisen’s — the traditional metal claw-style prosthesis. “Her parents told us about a cutting-edge program they recently found for their daughter that would be providing an amazing lifelike artificial limb that functions more naturally,” Freeburn says. “We felt it was so important to explore that option for Addisen, who was born without her right forearm and hand.”

The revolutionary program takes place at the Variety Myoelectric Clinic at Beaumont Children’s in Royal Oak. “They were able to provide Addisen … with the state-of-the-art myoelectric prosthesis that she calls her ‘helper arm,’ and it’s been life-changing for her,” Freeburn says. “We feel so fortunate to have this in our area, when other children have to come from across the country to visit this clinic.”

Variety Myoelectric ClinicViviana Pernot for SEEN

Addisen Freeburn, 7, of Saline, attends a session at the Variety Myoelectric Clinic, at Beaumont Children’s in Royal Oak.

“Myo” is the Greek term for muscle. The myoelectric prosthesis serves as a lifelike, battery-powered replacement for the missing anatomy of the arm, wrist and hand. Advanced hand motions in the myoelectric limb are controlled by electronic sensors activated by muscle signals higher up the child’s arm.

How the Program Works

“Serving children since 1981, the Variety Myoelectric Center at Beaumont Children’s is the only comprehensive program in North America that provides a doctor, two prosthetists, occupational therapists and the necessary funding for equipment and therapy services to children with limb deficiencies,” says Lois Shaevsky, president of Variety Detroit’s board of directors.

Without Variety facilitating the program and providing funding, it wouldn’t be an option for her daughter and other children, Freeburn says, “because typical insurance doesn’t cover the myoelectric prosthetics.”

Variety Myoelectric ClinicViviana Pernot for SEEN

Natalie Freeburn, of Saline, with her daughter, Addisen Freeburn, 7, diagnosed with a limb loss at her 20 week ultrasound.

Once accepted into the program, a child visits Hanger Clinic — a leader in prosthetic solutions— in Livonia to begin the fitting process. “We design and custom build each child’s prosthesis, and then provide follow-up for maintenance of any of the components,” says Joe Brenner, a prosthetist specializing in upper limbs.

Dr. Edward Dabrowski, director of pediatric physical medicine and rehabilitation, heads the program at Beaumont that includes specialized occupational therapy to help children use their prosthetic devices for daily activities and other fine motor skills.

Viviana Pernot for SEEN

Addisen Freeburn, 7, practices tying shoes.

Variety Myoelectric Clinic

Addisen Freeburn practices exercises at the Variety Myoelectric Clinic.

“We introduce infants at 6 months to a prosthesis to get them used to the weight, and typically by 12 months they can be fitted with a myoelectric hand,” Dabrowski says. “This allows them to eventually, more easily, use two hands to perform exercises like tying their shoes, playing sports, and other self-care and academic tasks that can be more difficult with a conventional prosthesis.”

Some of the program’s greatest support comes from the occupational therapy services at Beaumont Children’s clinics, at no cost to the family.

Ryan Barto, a pediatric occupational therapist for the program, works with the children he calls “rock stars” in play-based sessions to build their upper extremity and self-assurance.

“Activities are designed to help the children grasp and release, hold an object like a pencil, jump rope or baseball bat, and other common two-handed tasks,” Barto says. “Most importantly, we are helping the child to wear the aesthetically-natural myoelectric prosthesis with confidence.”

Variety Myoelectric ClinicViviana Pernot for SEEN

Ryan Barto, licensed and certified pediatric occupational therapist, instructs Addisen Freeburn, 7.

Michelle Murphy, executive director of Variety Detroit, says her 11-year-old-daughter Annabelle was born with a limb deficiency, and they turned to the Variety myoelectric program for their assistance when she was just 6 months. “As Annabelle has conquered each challenge — from holding her bottle, to nailing her tennis serve — she’s learned that determination, rather than a limb difference, defines her abilities,” Murphy says.

While Variety provides funding, an important facet to keep costs down is its limb bank. “Children are re-fitted yearly as they grow,” Shaevsky says, “and the used prosthetic limbs are then donated to the Variety Limb Bank, an exclusive collection of limbs, electronics and accessories, which allows these items to be used again for other children in need.”

At the Forefront of Research and Development

Variety received $50,000 from Children’s Miracle Network at Beaumont to fund Phase I and Phase II of a design project with BGM Engineering Inc. to update the hardware and software

“The work is so important because typically most of the design upgrades are geared toward adult prostheses and not the pediatric devices,” says Steven Miesowicz, chief operating officer at BGM Engineering Inc. in Shelby Township. He’s coordinating both phases of the two-year research and development project.

Phase I included the redesign and upgrade of the electrical assembly of the hand, in order to address recurring damages to microprocessors and motors. Prototypes have been completed and are being tested, and Phase II will begin after evaluations of mechanical design elements are completed.

Phase II will incorporate improvements to the mechanical drive system of the hand, including a new motor system. “Our main goal with these modifications is to create greater, more natural functionality with all five fingers that work as a natural hand, something not seen in traditional prostheses,” Miesowicz says.

“Not only does Anabelle navigate daily tasks with ease, but she also experiences increased self-esteem with an enhanced sense of symmetry and positive body image,” she says. “Her childhood is full — she’s happy, healthy, and fiercely independent — and that makes our hearts full, too.”

Variety Myoelectric ClinicViviana Pernot for SEEN

Ryan Barto, licensed and certified pediatric occupational therapist. instructs Addisen Freeburn, 7, at the Variety Myoelectric Clinic.

For more information about the Variety Myoelectric Center, email variety@variety5detroit.com.

Variety – the Children’s Charity Detroit

600 S. Adams Road, Suite 230, Birmingham

248-258-5511

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