Rolling, crawling and walking are all common milestones for babies. The first twelve months of a child’s life are filled with expectations that these common body operations will develop naturally. But what if they don’t?
2 year-old Madeline Maners, lovingly known as MJ, was diagnosed with Arthrogryposis Multiplex Congenita (AMC) while she was still in utero.
According to an article by Nationwide Children’s Hospital, AMC “involves a variety of non-progressive conditions that are characterized by multiple joint contractures (stiffness) and involves muscle weakness found throughout the body at birth.” One in 10,000 babies are diagnosed with this disorder.
Bryce and his three daughters
Parents Sarah and Bryce Maners, found out about MJ’s condition when Sarah was 21 weeks pregnant.
“I remember it was during Covid, which was absolutely terrible because Sarah had to go in and get a fetal non-stress test done to verify that MJ couldn't move her legs or arms and I wasn't allowed to be there. I just had to sit in the parking lot and wait,” Bryce said.
In her two years of life, MJ has had three surgeries to help with AMC, including a hip surgery performed by Shriners Hospital in South Carolina.
With AMC, MJ’s body is constantly trying to go back into the position she was born in, according to Sarah. With regular check ups and physical therapy, the Maners family is trying to combat that.
MJ has accomplished so much since she was diagnosed with AMC.
Physical Therapist from Knox County Board of Developmental Disabilities (KCBDD), Stacey Ciraky has been assisting the Maners family for two years, helping MJ grow and thrive despite her condition.
KCBDD is a local government agency charged with the responsibility to serve, protect and enrich the lives of individuals in Knox County who have developmental disabilities and their families, according to their website.
The organization carries out their mission by providing the community with services such as Home Visiting, Early Intervention and more.
Ciraky has been in pediatrics for 19 years, specializing in gross motor skills such as rolling, sitting, crawling, pulling to stand, cruising and eventually walking.
“It truly feels like an honor to share all of these milestones and accomplishments with the families,” Ciraky said. “I love getting a little video of something that we've been working on that a kiddo has mastered, it just lights me up.”
During Ciraky’s time with MJ, she has learned to sit independently, commando crawl, pull up to stand, cruise, walk and climb stairs.
As MJ is about to age out of the Early Intervention program, her parents plan to homeschool MJ with her two older sisters.
“What's really cool about homeschooling is that there are a lot of different curriculums that make it more engaging. And all of these curriculums are completely approved and are able to keep up with any K-12 program,” Bryce said.
MJ strolling along the track with her walker.
The Maners family will also continue their regular visits with Shriners Hospital to ensure MJ stays on track and can continue to gain most function of her body.
“Sarah and Bryce are really in tune with wanting MJ to maximize the range of motion she can get in her joints and work on the strengthening piece of it. They can continue to work on those things and that's how she's going to gain independent skills,” Ciraky said.
For more information about KCBDD’s services they provide to the Knox community, visit their website.
