Postcards from Jonah
Jonah Cario is kissed by a dolphin during the family’s trip in 2015 to Riviera Maya, Mexico.
Jonah paddleboards in a Honolulu lagoon in 2010.
Jonah, right, and his cousin, Mason Duprey, enjoy a trip in 2011 to Legoland California Resort.
The Cario family – Andrea and Rick and their children, Jonah and Leah – visited Disney World in 2015.
Jonah does his impression of the Statue of Liberty during a trip in 2014 to New York City.
Jonah and his sister, Leah, pose in 2014 at El Yunque National Forest in Puerto Rico.
The Carios, from left, Rick, Leah, Andrea, Jonah and Jonah’s grandparents, Wanda and Al Cario, pose for a family portrait during their 2010 vacation to Hawaii.
Nine-year-old Jonah Cario, an energetic third-grader at Muse Elementary School, has taken some fantastic trips in his short lifetime. He’s gone swimming with dolphins in Mexico, climbed Diamond Head volcano in Hawaii and taken in the sights of New York City, among other adventures.
He doesn’t brag about these trips to his friends; he’s not a bragging kind of kid. He realizes that not every family travels as much as his does. He also knows that his parents, Rick and Andrea Cario, have a purpose in making travel a priority in their family, which includes Jonah’s 6-year-old sister, Leah.
“We’re not globe-trotters,” Rick said. “We’ve always planned these trips so Jonah can experience as much as he possibly can, to expose him to a lot of things. You don’t know how long your child is going to be able to see it all.”
Jonah has a genetic condition called Stickler syndrome, which makes his eyes vulnerable to retina detachment and vision impairment. It’s considered a rare disorder, affecting one out of 7,500 to 9,000 births.
From the early days of coming to terms with the diagnosis, the Carios decided to provide Jonah with a bank of visual memories during his childhood.
“You can’t take for granted that you’ll have the time, so we didn’t put it off,” Rick said.
Jonah’s infancy was punctuated by treatments, therapies and hospital stays. He was born in Cleveland, where his parents – both Case Western Reserve University graduates – settled after marriage. Although the couple grew up just a few miles from each other in Washington County – Rick in Canonsburg; Andrea in Houston – they didn’t meet each other until college. They moved back to Washington County shortly after Jonah’s birth.
Jonah was born with a cleft palate, a condition in which the tissue that makes up the roof of the mouth is not completely joined. Because of it, Jonah required special techniques for feeding.
Within a few weeks, Jonah was diagnosed with Pierre Robin Sequence, a set of symptoms involving his lower jaw and tongue, which complicated his breathing. He also was diagnosed with moderate to severe hearing impairment, and had surgery to insert tubes. When he was 1 year old, his cleft palate was surgically repaired.
Doctors told the Carios that people who have Pierre Robin Sequence often have Stickler Syndrome as well. Genetic tests when he was 5 months old showed that to be true for Jonah. Stickler is a connective tissue disorder caused by a defect in one of the collagen genes. The syndrome is characterized by a distinctive facial appearance, eye abnormalities, hearing loss and joint problems. While the condition is often inherited from one parent, it also can develop as a new mutation, which is how Jonah’s occurred.
Jonah’s first year was an emotional one for his parents, to say the least.
“The breathing difficulties and choking episodes were very scary to us as new parents,” Andrea said.
Those problems subsided over time, but the prospect of eye problems continued to weigh heavily on the couple. “The risk of retinal detachment for Jonah was described by one of his doctors as a matter of when, not if,” Andrea said.
At age 6, the retina in Jonah’s left eye detached. It was repaired at the Cleveland Clinic, which has a specialty in genetic conditions of the eye. Even though the surgery was successful, Jonah lost a small amount of vision. Today, he wears glasses that correct his vision to 20/80. He also wears hearing aids.
Having had one retinal detachment puts Jonah at higher risk for subsequent ones. It can happen spontaneously, or it can be brought about by impact, so Jonah must abide by restrictions to physical activity. “No roller-coasters, no bumper cars, no bouncy houses, no trampolines,” Rick said.
“I still don’t understand why no trampolines,” Jonah interjected.
Rick simply smiled. “I’d keep him in a bubble if I could,” he joked, giving Jonah a warm hug.
But in fact, Rick and Andrea make sure that Jonah does not live in a bubble. “We do our best to find a balance between avoiding high-risk activities to help protect him, while letting him experience as much as possible,” Andrea said.
Jonah plays street hockey with the kids in his neighborhood and swims on the South Hills YMCA team. He’s a Cub Scout with Pack 1369 in Cecil Township, where he just earned his Bear badge.
And he has travel adventures.
The family trips began in 2010 with a trip to Hawaii, where 3-year-old Jonah climbed the famous Diamond Head volcanic cone.
The following year, the family went to Southern California, where Jonah visited the San Diego Zoo, saw the famous Hollywood sign and took in a game at Dodger Stadium. Driving a Lego car in Legoland was his favorite part of the trip.
A trip at age 5 took him to the Outer Banks of North Carolina. Disney World merited two trips, at ages 6 and 8. During one of the trips, Jonah won a dance-off with Phineas and Ferb. “They kept choosing me to be in the circle,” Jonah said, as if he still found it astounding.
In 2014, the family spent a weekend in New York City, where Jonah saw “Aladdin” on Broadway, rode taxis and the subway, and climbed the stairs inside the Statue of Liberty. “For some reason, I thought the subway would look like the sandwich shop,” Jonah said with a laugh.
The family’s trip to Puerto Rico later that year was, in Jonah’s words, “the best trip ever,” with its beautiful beaches and exotic tropical rainforest.
Last year, the family went to Riviera Maya, Mexico, where Jonah swam with dolphins and donned fins and a snorkel to get a look at the colorful underwater life. “I was afraid of snorkeling at first, but then I got used to it,” he said.
In July, the family will fly to Denver, then drive north to the Black Hills of South Dakota, Badlands, Yellowstone, Grand Teton and Rocky Mountain national parksmand other sites. Jonah’s been reading up on the trip and is most excited about seeing the Old Faithful geyser and Mount Rushmore National Memorial.
On this trip, like many of the others, grandparents Al and Wanda Cario of Canonsburg will accompany them.
“We tag along,” Al Cario said, adding that his daughter-in-law, who has planned every trip, would make a terrific travel agent if she ever decides to change careers. Andrea is an engineer in the power industry; Rick is a sales manager for a company that services the steel industry.
“Jonah is a very intelligent, insightful, kind,” his grandfather said. “He knows a lot about a lot of things beyond his own age.”
“And he’s a typical 9-year-old old boy. Sitting still is a problem,” he added with a laugh.
Rick and Andrea say their son takes his condition in stride. “Everyone has something they’re dealing with,” Jonah has told them. The condition has taught their son empathy and to stand up for others, they said.
Rather than calling attention to his family, Rick hopes that telling Jonah’s story “will raise awareness that many kids are facing obstacles that life has handed them.”
“Someone sitting next to you in class may have more going on than you think. Just be nice,” he said.
Jonah has a wish list for his next adventures. He’d like to see London, Paris and the Antiquities of Rome. Close to home, he’d like to see Washington, D.C., and Niagara Falls.
It comes as no surprise that a map of the world is pinned to the bulletin board in the Cario kitchen. Jonah completed it in geography class. He got an A-plus.