Joey graduated from Springfield High School in 2022! We are so proud of you!
The Akron Children’s NeuroDevelopmental Science Center (NDSC) brings together 5 pediatric specialties under one roof to deliver the best outcomes and quality of life for children affected by neurological and developmental disorders. For Joey Ricci, now 18, the NDSC is where his health journey began.
At 6 months old, Joey still wasn’t thriving, and tests were still inconclusive on a cause. At one of Joey’s neurology appointments, the doctor mentioned his symptoms presented like those with mitochondrial disease.
Soon after, Joey was diagnosed with Mitochondrial Complex IV, a genetic disease that can cause a range of health problems, including developmental delays, muscle weakness, gastrointestinal disorders, swallowing difficulties, liver disease and hearing problems.
“It was 2004 and the first time I had ever heard of mitochondrial disease,” said Karen, Joey’s mom. “It was great to have a diagnosis, but with mitochondrial there’s no play book. Every case is different.”
With a happy disposition and incredible might, Joey has learned to crawl, walk and even say a few words, despite the challenges and uncertainty his condition brings.
To manage Joey’s condition, his care team had to focus on specific symptoms in the hopes of improving them. One of his providers and biggest advocates is Kathryn Mosher, MD, pediatric physiatrist and director of the neuromuscular clinic at Akron Children’s, who has been working with Joey to build cognitive and core strength since he was 3.
“At first, no-one thought he’d ever talk, crawl or walk, but Joey has always been motivated,” said Karen. “It took him 1-and-a-half years to have the strength to cry, which was heart-breaking and beautiful…At 2 he started to army crawl then came walking and that’s when something clicked. He started progressing more – grunting, pointing, pinching and grabbing and showing more interest in puzzles, blocks and toys.”
With progress, though, came setbacks. Joey was also diagnosed with polycystic kidney disease and later, ulcerative colitis. Medications and regular appointments with an array of specialists continue to help him manage symptoms.
“Dr. Mosher has been with us every step of the way, literally – from walkers and gait trainers to bracing and everything in-between,” said Karen. “If we need referrals or advice on next steps, she is always available. She really talks to us and listens to any concerns or worries we may have. It’s important that we’re on the same page when it comes to Joey’s care.”
Joey is not only a patient, but also a supporter. With the help of his family, Joey raises funds and the spirits of others through events like the 2019 Akron Marathon and the Have a Heart Do Your Part Radiothon.
Joey has in-person visits Dr. Mosher at least 1-2 times per year. With the help of technology, Joey’s family is also able to connect with Dr. Mosher, and other members of his care team, from home.
“Joey often has multiple issues going on at once so MyChart has allowed us to get things like X-rays or questions answered without having to make appointments, which has been really helpful for our family,” said Karen.
While Joey’s condition is relentless, Joey persists with a positive spirit and infectious smile.
“Towards the end of last school year, we added an iPad as a communication device for him to make choices at home and school. I also taught him some sign language,” said Karen. “These things have helped lessen his grunting and pointing and increased his determination to show others that he can answer and say what he wants, just in a different way.”
Joey is no stranger at Akron Children’s – from inpatient hospital stays to special events and engaging with staff – and he always brings his best.
Joey, who still works hard to walk, is now standing at an impressive 5’5” tall! He also graduated from Springfield High School this past spring. He still attends school to receive some services like physical, occupational and speech therapies, as well as to stay active with Sparkle, an all-inclusive cheer squad, and schoolmates.
“After all these years, Joey still loves his Akron Children’s care team, hospitality staff and volunteers who give him knuckle bumps or blow him kisses,” added Karen.
To learn more about how the Akron Children’s NeuroDevelopmental Science Center (NDSC) helps patients with neurological and developmental disorders, call 33-543-8050.
