The Captivating Connor

0

Photo by Whitney Matewe

Connor Strope may not be a superhero like Catboy, Owlette or Gekko from his favorite show, “PJ Masks.” But this 11-year-old does boast a

cape and a special title — Champion Child.

Connor is this year’s ambassador representing the state of Missouri for the Children’s Miracle Network Hospitals — an organization that helps support 170 children’s hospitals throughout the U. S. and Canada.

Connor scoots on his hands and bottom to move around his family’s Jefferson City home.  He can pull himself up onto the couch to sit comfortably and watch “The Lion King” or “Minions,” which he already knows by heart. Otherwise, Connor uses his wheelchair to get around.

“I love this,” Connor says, brandishing a red cape with his name on the back in the air. “It can fit on my wheelchair back.”

During pregnancy, an ultrasound showed that Connor’s bones weren’t growing like they should, Connor’s mom, Stacy Strope, said. A biopsy after Connor’s birth confirmed the diagnosis as osteogenesis imperfecta (OI). Also known as brittle bone disease, OI is a rare genetic disorder that affects bone formation, bone strength and the structure of other tissues, according to the Osteogenesis Imperfecta Foundation. Stacy and Connor’s father, Paul Strope, found treatment for Connor’s severe type of OI at the University of Missouri’s Women’s and Children’s Hospital, where they have continued commuting for Connor’s care ever since their son was 3 months old.

It’s a tough disease for an active child. Just two months before his first birthday, Connor broke his arm. He has had several surgeries to implant metal rods into his arms and legs to straighten bones and repair fractures. At times over the past decade, his treatments have involved trips to Columbia as many as nine times a year.

The Stropes’ deep relationship with the Women’s and Children’s Hospital and Connor’s talkative nature sealed his nomination as the Champion Child for Missouri, one of 52 such Champions representing each state, Washington D.C. and Puerto Rico, said Kristen Fritschie, Children’s Miracle Network coordinator for the Women’s and Children’s Hospital. As a Champion Child, Connor will have the chance to educate others about his disease and his experience with the hospital and raise awareness for the network that supports research, training and new equipment to help improve the lives of the children member hospitals care for.

Connor, his parents and his younger sister, Mallory, will bookend his year as Champion Child with trips to Washington D.C. and Disney World. Seeing all of the ambassadors with their variety of diseases and disabilities on their trip to Washington D.C. this past June was a celebration and learning experience for the Stropes, Stacy said.

Photo by Justin Kelly
Photo by Justin Kelly

“Why are they different, mom?” Connor asked.

“That’s the way God made them,” his mom answered. “We try to explain — everybody’s different — just like your bones don’t grow like everyone’s.”

The trip also marked Connor’s first airplane ride — though, hopefully, not his last. Someday, he hopes to fly regularly — on a rocket ship, that is.

A fourth grader at Blair Oaks Elementary School in Jefferson City, Connor’s favorite subject is science (and recess). He became the solar system expert in last year’s class — useful information for this aspiring astronaut.

“Ceres, Pluto, Haumea, Makemake, Eris,” Connor shows off by naming the dwarf planets.

“What’s the hottest planet?” his dad asks.

“Venus.”

“Are you sure?”

“It has all the clouds that trap in the heat,” Connor says.

“I thought Mercury is the hottest planet.”

“Yeah, it is – when it’s facing the sun, it’s burning hot!”

At the Champion Child announcement, Women’s and Children’s Hospital child life specialist LeAnn Reeder observed, “Connor accepts his disabilities without question, and he handles every situation with a smile. He represents strength and attitude over adversity.”

Thanks to the doctors and staff at the hospital and his supportive family, Connor is looking forward to a full and physically active life. At the back of a photo book that Stacy made to document Connor’s first year, she typed, “One year down, a lifetime to go!”

Leave A Reply

Your email address will not be published.