WESTFORD — Kailyn Bennett has a giggle that’s impossible to ignore.
The 3-year-old Groton native smiles at nearly everyone and everything she comes in contact with. That bubbly joy is infectious to everyone around her — her mother Jessica as she plays with Kailyn and the physical therapists at Emerson Hospital’s Westford Health Center as they help Kailyn learn to walk.
Physical therapy might be a difficult undertaking for some, but Kailyn’s laughter makes it seem just like playtime that helps her progress. And given the fact that she can walk around almost completely on her own despite being deemed immobile since birth, Kailyn’s joy seems all the more warranted.
Despite being legally blind with hearing loss as well, Kailyn was up and about during her session on Wednesday. Speaking during Kailyn’s therapy session on Wednesday, Jessica said her daughter suffers from two rare genetic disorders: Trichothiodystrophy and Type 2 Cockayne syndrome, both can lead to delays in physical and mental development. Jessica said that Kailyn started with early-intervention therapy since birth before jumping to speech therapy, occupational therapy and then physical therapy within six months.
“We obviously wanted to help her in any way possible but what I didn’t know was what do you do for physical therapy with a six-month old,” Jessica said. “Having come here now for several years, I can’t imagine not having this level of support teaching us what we can do at home and showing us different activities we can do. It’s not a replacement for early intervention, it’s been complementary to early intervention services.”
One of the therapists that helps and cheers on Kailyn during her therapy sessions is Mary Evans, who specializes in pediatric rehabilitation. Evans said that, like with other children she sees, the priority with Kailyn was to figure out what she responded to and build her motor skills from there. As she uses a wheeled framed walker to support her, Kailyn responds to musical instruments or light-up toys that motivate her to move.
“It was obvious that Kailyn was a bit of a pistol,” Evans said. “Even as a little infant, she knew what was fun and funny and she wanted fun and funny. She didn’t get caught up in being a fusser, she wanted to have a good time. It was clear that she liked music so that’s why you see us with chimes and we’ll do pianos.”
Once Kailyn was a year old and it was realized she wouldn’t be able to walk yet, according to Evans, some help was needed. The therapists started by putting Kailyn on a treadmill with a harness that suspended her over the treadmill while therapists helped her move her feet. By 18 months, the therapists decided to bring in extra help.
If Kailyn has fun walking around her therapy, she gets even more joy out of driving around in her custom-made motorized car. This, along with her standing-frame walker, came courtesy of the national Complex Rehab Technology developer Numotion.
Evans reaches out to Numotion whenever a patient is in need of supportive equipment, observing different models and determining what is best.
Numotion tests the requested equipment and measures patients to be sure each support item fits the user best. Numotion provided Kailyn with her motorized car customized to have its accelerator on the wheel of the car instead of having foot pedals. The car came out of Numotion’s partnership with Go Baby Go!, a non-profit research program founded in 2012 by the University of Delaware that customizes typical motorized cars for children to fit the needs of those with mobility issues.
“We put a lot of time into supporting therapists who are helping provide motion for special needs kids,” Rian Mallari, Numotion’s director of sales operations, said on Wednesday. “We just want to give them the tools to offer power mobility.”
“It’s very exciting to see that she can do this,” Evans said. “It’s very rewarding too. Physical therapy is a great job and pediatric therapy is even better.”
Jessica said that seeing her daughter not only progressing but actively enjoying therapy is the most rewarding thing for her as a parent.
“Kailyn has had very few sad days in her life,” she added. “There are very few days when she gets upset and so Kailyn’s world is full of giggles. She’s the happiest child in the world and she’s extremely social. It makes all those other challenges, all those hospital stays, all those therapy appointments, all the conferences and all the medical talk you have to navigate through, it makes it all worth while and relatively easy.”