Little Orla awakens every morning to the sounds of her four siblings getting ready for school. Her mother, Karyn, deftly herds her brood from the breakfast table to the front door, getting everyone off to school with full backpacks and combed hair. Now it’s time for Karyn and Orla to have their learning time together.
When Orla was two months old, Karyn and her husband noticed that Orla was not developing as quickly as her other children had in their infancy. “After four kids, you kind of know what to look for at different steps of development,” said Karyn. We knew that Orla needed expert intervention to help her strengthen her core muscles and her legs, she was diagnosed with a degenerative muscle disease and needed extra help to get strong. We knew that she needed to stand up more so that her hips and legs could develop properly.” Karyn and her husband quickly found a physical therapist to help guide them so that Orla could get ready for toddlerhood.
Finding a physical therapist was the easy part, but finding specialized adaptive equipment for their beloved infant was not easy. “We learned that Orla could receive adaptive equipment, but the evaluation system would take months and months. “We didn’t have months and months to work through the bureaucracy and wait for equipment to come through for Orla, we didn’t know what to do, fortunately Sarah, Orla’s physical therapist knew about ADA.” said Karyn.
Sarah, a physical therapist, works at New York University (NYU). She knew about ADA through a decades-longtime relationship between both institutions. “Sarah approached ADA and described the piece of equipment that Orla needed to help her body strengthen” Said Eric Gottshall, Senior Designer at ADA. “Orla needed equipment that could help to hold her body upright. She’s only eight months old, so we needed to be extra sensitive to what a young body needs for comfort and is therapeutically helpful.” Orla was put on a waiting list at ADA, and it would be another one to two months before Eric could get to her Stander.
After meeting Orla, Eric went through his day, increasingly bothered by the fact that Orla would have to wait so long for her equipment, he knew something had to be done, he had to make that equipment fast for this little baby. “I sat down with the design team and we reviewed our projects, moving Orla’s Stander to the top of the list. Much to Karyn’s surprise, the Stander was completed in just two weeks and delivered by Eric.
Image Descriptions: Photo 1: Mixed media (cardboard and plywood) stander for Orla in progress. Photo 2: Stander for Orla in its completed state, painted pink with support straps and cushioning. Special features for Orla include the ability to recline to an alternative angle, an add-on tray, a handle for easy transport, and custom-made headrests, cushions, and straps.
Orla now has a stander that was built especially for her. Her legs and feet are strapped to the Stander and she is learning about standing and using the ground to support her body. Sarah works with Orla and Karyn and every day Orla is getting stronger. “Orla is not thrilled to be strapped into the stander, but we can see how much this equipment is benefitting her.” Said Karyn. “We are thrilled that Orla could get this equipment so quickly and that the designers were so focused on making equipment that is just for her.”
Image Description: Orla, eight months old, is testing out her Stander for the first time with her Physical Therapist. Orla's eyes are tearing as she figures out how she feels about her new equipment. The therapist comforts her by helping her with her binky.
Orla, loves her binky and loves the happy commotion in her house, especially when her brothers and sisters come home. Someday, as she grows, ADA will design more customized equipment to help her become even more mobile. The goal is for Orla to be strong enough to be part of the fun that seems to happen every day when her brothers and sisters burst through the front door after a long day at school.
Image Description: Orla, eight months old, utilizes her new pink stander at home. Her tray is accompanied by her Barbie, stuffie, and tablet. Custom made cushions frame her face to support her head. She has a her head tilted with her binky in her mouth.
Orla’s stander was provided by ADA at no cost to her family. The expense of creating specialized equipment is covered by donations from people who care. It costs approximately $1,200 to create a piece of adaptive equipment. We invite you to join our family of supporters with the knowledge that your gift directly benefits children all over the boroughs of New York, who need extra care and attention to get equipment that can help them grow and thrive.
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