Getting a Grip: Robotic Arm Puts Everyday Activities Within Reach
Cook Children's Home Health helps obtain a life-changing device for college student with a muscular disorder.
Vivianna Madera can drink from a cup, flip a light switch, and pick up her phone thanks to a robotic arm attached to her wheelchair.
That device – with joints that extend, lift, tilt and grip -- enables Vivianna to perform many simple tasks on her own. She operates the robotic arm at the touch of a switch.
Vivianna is one of about 25,000 Americans who live with spinal muscular atrophy (SMA), a genetic disorder affecting the nerve cells that control muscles. Vivianna can talk and move one wrist and a thumb. But she can’t move other body parts due to the progressive muscle weakness and deterioration caused by SMA.
That’s why the robotic arm, delivered to her Aledo home in October 2024, makes such a difference for this 20-year-old. Vivianna’s knack for optimism and persistence came in handy as she practiced by grabbing Uno cards and Jenga blocks. She maneuvered left and right, up and down, and back and forth to figure out the sensitivities and capabilities of the robotic arm.
“It’s helped with my independence,” she said. “You have to be very patient. I’ve had to learn how to have a gap and how far the fingers have to be open to grasp something.”
The Custom Mobility Division of Cook Children’s Home Health played a key role in helping Vivianna and her family win insurance approval. The process took about a year and a half, including an appeal when the initial request was denied. Her assistive technology professional (ATP) at Cook Children’s made the case that a robotic arm was necessary for medical and safety reasons.
“The robotic arm is not a convenience item,” said Custom Mobility Manager Briyet Sigala, ATP. “If there’s a fire or tornado or active shooter, it’s going to allow her to open doors and get to a safe location.”
The apparatus also gives Vivianna a better quality of life. Now she’s able to get a drink by herself, move lightweight objects out of her wheelchair’s path, and help her family with the cooking. In November 2024, she proudly voted unassisted for the first time by poking the touch-screen ballot with a cotton swab held in her robotic fingers.
Understanding Viviana's Condition
As an infant, Vivianna could roll over and try to pull herself up. But at 9 months she stopped moving, said her mom, Kate Madera. She was diagnosed with an intermediate type of SMA. Vivianna began using a wheelchair at 18 months old.
“I can’t walk, but I can drive real fast,” young Vivianna liked to say.
By the time she was in third grade, she had lost the ability to write, brush her teeth and other function of her arms and hands. Over the years she received Cook Children’s Pulmonary, Neurology, Orthopedics and Gastroenterology specialty care.
“I really need help with every aspect of my life,” Vivianna said. “Right now, I’m at Weatherford College studying political science. My nurse comes with me to make sure that I’m OK and to help me when I need it.”
Robotic Flex
The Madera family reached out to the Custom Mobility Division at Cook Children’s Home Health when Vivianna needed a new wheelchair. They decided to try for insurance approval for a robotic arm, too, which required an evaluation, physician letter, and other supporting documentation. Sigala wrote a 10-page letter of medical necessity. They also submitted videos showing Vivianna using a demo model.
The first application for the robotic arm was denied in 2023, but an appeal was approved in August 2024.
Vivianna remembers how it felt the first time she reached out and clutched a cup:
“Amazing.”
Learning to operate the robotic arm isn’t easy. Kate says her daughter has a way of figuring things out, and she doesn’t give up. The robotic arm gives her more agency as a young adult.
Kate credits Sigala with being an instrumental advocate along with Vivianna’s occupational therapist and an attorney from Disability Rights Texas. “They really fought for her,” Kate said. “I couldn’t be more grateful.”
Empowering Lives Through Custom Mobility
Cook Children’s Home Health provides an array of in-home medical care and delivery of supplies to thousands of patients in five locations across Texas. The staff in the Custom Mobility Division specialize in custom durable medical equipment that meets each patient’s specific needs, such as power wheelchairs, manual wheelchairs, car seats or products for bathing.
“We meet with families and therapists, and we essentially listen to what is it they’re looking for? What is it they’re struggling with? We try to get the full picture,” Sigala said.
Custom Mobility serves patients ages 1-21 who require specialized products that are used as tools for mobility and other activities of daily life. Some were born with conditions such as SMA or muscular dystrophy. Others have been injured in drownings, shootings or vehicle accidents. New equipment requires an order from a Cook Children’s physician or therapist.
Because the usage is long term, Sigala says, the specialists go out of their way to find or design custom pieces with the exact size, best comfort and even the color the patient desires. She remembers collaborating with the manufacturer who engineered, at the family’s request, a wheelchair with the footplate and shock absorption from two different frames.
They also repair equipment when needed, as promptly as possible.
Like the teams across all Cook Children’s sites, they’re connecting the dots to provide exceptional care.
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Cook Children's Home Health
Cook Children’s Home Health works with your family and your child’s physician to deliver equipment and supplies that meet your child’s individualized plan of care. The trained technicians in our Custom Mobility Division specialize in rehabilitative technology including wheelchairs, gait trainers, standing frames, adaptive strollers and much more. Home Health also offers Pharmacy Services, Orthotics and Prosthetics, Rehabilitation Services and Cranial Helmets. Please contact your child’s physician for a referral. Find locations and other information here.
