Mr. Unstoppable

KNOWN IN REAL LIFE AS:

JOEY RICCI

SUPERPOWER:

CONQUERING THE MEDICALLY IMPOSSIBLE

DIAGNOSIS:

MITOCHONDRIAL DISEASE

Meet Mr. Unstoppable (Joey Ricci) at the Akron Marathon
on September 28.

Mile

View a course map.

Meet Mr. Unstoppable

Joey Ricci, Age 15, from Springfield Township, OH

Why Joey is a #ACHero: Strength isn’t a strong enough word to describe Joey’s physical and mental stamina. 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.

Sidekicks: Joey has a community of supporters – from neighbors, friends, classmates and teachers to doctors, nurses and therapists.

When he’s not busy overcoming obstacles: Joey is a member of the Springfield Sparkles, an all-inclusive cheer squad, where he cheers on runners, the football team and basketball players at his school. He also enjoys watching parades, cars, fire trucks and live musicals.

Did you know fact: When Joey is happy, his hands move back and forth, and he lets out a squeal that sounds like a cross between Chewbacca and a pterodactyl.

Joey’s Story:  Although he doesn’t wear an “S” on his chest like Superman, Joey Ricci has the strength of a superhero. He has endured countless needle pokes, biopsies, hospital stays and therapy sessions to manage his medical complexities. While his condition is relentless, Joey persists with a positive spirit and infectious smile.

“I had a healthy pregnancy, so when Joey didn’t pass his newborn screening for failure to thrive reflexes I was surprised,” said Karen, Joey’s mom. “At home, seizure-like episodes started and choking due to reflux. We took him in for testing, but nothing was showing up.”

At 6 months old, Joey still wasn’t thriving, and tests were still inconclusive. At one of Joey’s neurology appointments, the doctor mentioned his symptoms presented like those with mitochondrial disease.

“It was 2004 and the first time I had ever heard of mitochondrial disease,” said Karen. “I attended a mitochondrial symposium to learn more about it…the doctor described all the symptoms Joey had been suffering with.”

Two months later, Joey was diagnosed with Mitochondrial Complex IV, a genetic disease that can cause a range of health problems including muscle weakness, gastrointestinal disorders, swallowing difficulties, liver disease and hearing problems.

“It was great to have a diagnosis, but with mitochondrial there’s no play book. Every case is different,” said Karen. “Joey is also missing chromosomes 4q21-22, so we’re not sure what those chromosomes do until something presents in Joey.”

Since there is no cure for mitochondrial disease, management of Joey’s condition focuses on his specific symptoms in the hopes of improving them.

At 18 months, Joey had surgery for obstructive sleep apnea. While sedated, surgeons were also able to place ear tubes in both ears and remove his tonsils and adenoids to help his breathing. He ended up in intensive care because he had a hard time with sedation. After surgery, the nonverbal Joey cried for the first time since he was born.

“His vocal tone had always been low because he didn’t have the energy to cry. He was too weak,” said Karen. “It took him 1 and a half years to have the strength to cry. It was heart breaking and beautiful.”

Joey’s parents and therapists continued to work with him to build cognitive and core strength.

“Doctors didn’t think he’d ever talk, crawl or walk, but Joey has always been motivated. When he was little, it was getting to the diaper wipe box,” laughed Karen. “At 2 he started to army crawl on his elbows, not knees, to get to it.”

Joey continued to get stronger and, at age 3, he began using a gait trainer to help with mobility. At 4 and a half he took some wobbly first steps away from his walker.

“Once he started walking, something clicked,” said Karen. “He started progressing more – grunting, pointing, pinching and grabbing and showing more interest in puzzles, blocks and toys.”

With progress, though, have come setbacks. Joey was diagnosed with polycystic kidney disease and later, ulcerative colitis. He now takes medications to manage symptoms and has regular appointments with an array of specialists who monitor his conditions.

“We practically live at Akron Children’s, and they’re all wonderful with Joey and his care. We’re so thankful,” said Karen. “Joey has an extremely high tolerance for pain, so he’s always happy despite what his body is going through.”

Today, Joey can now say a few words and continues to work hard at school and therapy to be at his best.

Despite the hardships Joey’s condition causes, he is always quick with a smile or happy hands to let those around him know not to give up because he is going to keep right on pushing to reach his goals.

 

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