Joe Carr is an excellent example of what Gillette Children's Specialty Healthcare calls “Generation CAN.”
The 16-year-old Richfield High School junior is active on social media, plays several sports, continually cracks jokes and is a generous fundraiser for Gillette.
Doctors at Gillette diagnosed Joe as having spastic quadriplegic cerebral palsy when he was 3 years old. His level of cerebral palsy means all four of his limbs are affected and he has difficulty speaking. He uses a power wheelchair and an alternative and augmentative communication device that runs on his iPad.
Joe and his family have a long history with Gillette and credit the expert medical care he’s received as one of the reasons why he’s never put any limits on what he can achieve.
Making Joe's life even better
“The people at Gillette are always looking for ways to make Joe’s life even better,” his mother Kristi Carr says. “For example, we just love Brian Reilly, a seating specialist at the Gillette Burnsville Clinic. Joe had a recent growth spurt and now uses a different manual wheelchair. He was having issues with the tray that holds his iPad communication device. Brian told us what parts to order off of Amazon and he helped us craft a special iPad holder. Brian truly went out of his way to make sure Joe was as comfortable as possible and able to easily use his iPad.”
Joe agrees with his mother’s assessment and says when he was in middle school he was often frustrated because it was difficult for him to communicate with other kids at his school. He says improvements in the communication software and the friendships he’s built with his fellow students mean he’s now better understood and people appreciate what he has to say.
Cracking jokes and bringing smiles
Kristi recognizes her son’s great sense of humor helps him open doors and build relationships. “Everywhere we go people are happy to see Joe and often comment on his sense of humor. I know Dr. Taniguchi, Joe’s doctor for phenol and Botox injections, especially appreciates Joe’s quick wit,” Kristi says. “I can hear the two of them laughing in the exam room and both of them are smiling after the appointment. That’s nice and fun to see.”
Kristi and Joe Carr are grateful he can receive a multitude of services at Gillette and that helps them save time and be assured he’s getting comprehensive care. “Joe gets therapy, Botox and phenol injections to reduce spasticity, Baclofen pump refills a few times a year, special dental care, custom orthotics and help from the seating team. We feel so lucky to have a strong connection with Gillette,” Kristi says.
Never give up on your dreams
When he was 13 Joe was not exactly sure what he wanted to do after high school but told his family that he’d like to live in an apartment near the Wisconsin Dells. He laughs when he recalls this plan and says he now wants to have a career covering sports in the Twin Cities metro area.
One of Joe’s biggest role models is Chicago White Sox baseball announcer Jason Benetti who was born prematurely and also has cerebral palsy. Joe says Benetti represents one of his own life mottos: “Never give up on your dreams.”
Kristi says she and her husband Mike know Joe has a bright future. Their older daughter Eleanor is off at college and Joe is looking forward to his own next chapter in life. “We’re happy the Richfield schools have a transition program for kids like Joe. The program helps 18 to 21-year-olds learn life skills and helps them find a job and become independent,” Kristi says.
Kristi says guiding a child who has cerebral palsy through toddlerhood, childhood and adolescence has its challenges. “I would tell other parents to build your network!” Kristi exclaims. “Gillette can help you get in touch with other parents, point out reliable websites, connect you with the experts. Don’t try to take this challenge on all by yourself. There are always new therapies being developed and new technologies to try. The future is bright for people who have CP. “
It’s Cerebral Palsy Awareness Month. All month, we are honoring and recognizing those who have cerebral palsy. Visit https://gillette.mn/CP regularly for the latest on our world-renowned patient care, research and innovation.
At Gillette, We See CP.