Twice a week, Jaxon attends The Bell Center for Early Intervention Programs. He is in the All About Me program with five other toddlers. This class is run by a transdisciplinary team made of an early childhood special education teacher, speech-language pathologist, occupational therapist, and a physical therapist.
Jaxon was born nearly three years ago, in spring 2019 and started attending therapy at The Bell Center when he was three months old.
“It really wasn’t until he was born that we got a full picture of what was going on,” Jaxon’s mother, Erica Drake said.
Jaxon was born missing his right foot, a clubbed left foot, missing and malformed digits on his left hand, stage one kidney disease as well as vision and feeding challenges.
Within the first month of his life, a neurologist diagnosed Jaxon with Mobius syndrome, a rare congenital condition that results from underdevelopment of the facial nerves that control some of the eye movements and facial expressions. The condition can also affect the nerves responsible for speech, chewing and swallowing.
“It has been a challenge because his diagnosis is so rare, so it isn’t like we have just one go-to person to get information. His dad and I are just figuring this out as we go,” Drake said.
According to the Cleveland Clinic, Moebius syndrome is very rare. The exact incidence is unknown, but some experts’ estimates are 2 to 20 cases per million births.
“When we started at The Bell Center, Jaxon couldn’t crawl. Honestly, he couldn’t even bear weight on his weight when we would try to hold him up to stand on our laps. He had no strength in his legs. Now, he’s walking in a walker, attempting to crawl on his own. He can sit up and he scoots himself anywhere he wants to go,” Drake said.
An occupational therapist at Children’s Hospital referred Jaxon to The Bell Center shortly after he was born.
“We are so thankful for a place like The Bell Center that has truly customized his care and his therapy to meet his specific needs,” Drake said. “All of the therapists at The Bell Center have a different perspective, but they bring their thoughts and ideas together to really look after the kids in the program.”
Physical therapist Holley Steele was on Jaxon’s therapy team when he started at The Bell Center as an infant, in programs Bright Beginnings and Little Leaps.
“I saw him make huge progress while he was on my team,” Steele said. “He has done so well. In addition to movement, we worked on spatial awareness. He progressed from learning how to sit up, then assisted crawling.”
In the All About Me program, Jaxon is thriving.
“One thing about Jaxon, even though he has hypotonia, vision issues and feeding challenges and all of these other things, he is a fighter. He knows nothing else, he’s just a really happy boy. He is progressing in his own way,” Drake said.
Jaxon’s therapy team has seen him come a long way as he transitioned from his infant programs into a toddler class. He is now using a communication device with pictures to make choices in the classroom.
“He gets excited about being able to participate using the device,” Speech language pathologist Peyton Rose said. “He smiles and shows a lot of joy during music. His favorite part of music is playing with a shaker.”
Jaxon’s therapy team works with him and his parents to create attainable goals within various developmental domains including social, emotional, gross motor and feeding. He is currently working on imitating gestures and getting more comfortable using his walker to navigate his home environment.
“The staff at The Bell Center treats Jaxon like a person, not a kid with special needs. Providing therapy to the kids they see is more than just a job to The Bell Center staff,” Drake said. They really make the place amazing.”
As he approaches his third birthday, Jaxon continues to make progress in all areas of development.
“We fit at The Bell Center,” Drake said. “We have found a place that we fit.”