WEST CHESTER — Connor Grimes used to tell people he was attacked by a shark when they would inquire about the scar left when his mom gave him half her liver 20 years ago. Today, the pair use their ordeal to encourage life-saving organ donation.
When Grimes was born March 3, 1996, his color wasn’t good — his mom Diane said he was the color of a florescent light bulb. The doctors here weren’t too concerned at first, but further tests and a surgery when he was but a month old showed he had Biliary Atresia.
“There is no known cause and there is also no cure,” Grimes said of her son’s condition. “The only way to cure is to get rid of the liver, thus a liver transplant is the only way to treat it.”
Grimes said they tried to get him on the transplant list here, to no avail. Her sister took to the internet and found out living, related donation “was such a thing.” The procedure was very new and hospitals here hadn’t done many, if any.
Connor was extremely sick and frequently in and out of the hospital, but after two-and-a-half years Grimes found a doctor in New York who agreed to look at Connor’s case and ultimately performed the transplant, giving Connor about 40 percent of his mom’s liver. Diane said any parent would do the same.
“It’s not anything any parent wouldn’t do,” she said. “I am not a super hero. I’m not special.”
Her son, now 22 and entering his final year at Ohio University — his major is music therapy — would beg to differ.
“My mom is my hero,” he said, tamping down tears. “Some kids run around wanting to be superman, I want to be someone as thoughtful and caring as my mom. She really risked her life for me and I could never repay her for that.”
Mom sports a 17-inch scar but her liver has fully regenerated itself and she has never suffered any ill effects. Connor, other than a scary tumble from a balance beam and a month and a half out of school because of a chicken pox epidemic, has also come through virtually unscathed, except for horrible bout with intense pain in 2015.
The doctors here again couldn’t help, so back to New York they went where Diane said they basically had to “roto router” out old scar tissue.
He travels to New York annually for check-ups and has to still take anti-rejection medications daily. But he says his condition has enabled him to help others, which pleases him no-end.
“When I was a little kid I would tell people I was attacked by a shark because they would see this enormous scar and freak out. When I was younger I was self conscious about it… I didn’t want to talk about it,” Grimes said. “But when I got older I kind of like realized this is amazing, I have this gift and I can educate the world about it.”
And they have, speaking often at places like the Lakota Schools, urging students to be organ donors.
“There’s been so many people we’ve met in our life that have become organ donors after hearing our story,” he said. “So to know that we’re able to get more people onto the list of organ donors. I just feel like that’s an incredible gift to be able to share that knowledge with people and I feel it’s very important to keep spreading that.”
Diane also has a photo album, all images of kids they have helped directly. There was one instance where a family was shying away from transplant surgery as too risky. Once they were finally convinced, scheduling the surgery here ran into snags.
She called New York — again — and they told her to get the child there. The family of the boy, who had only days to live at that point, had no money to get there. Grimes started calling numbers she was given from organizations who help in these situations.
She got to the last name on her list, dialed the wrong number, and got a woman — whose husband was saved many years ago by a Good Samaritan who paid the way when he needed a transplant — who ended up paying for the family to get to New York for the transplant.
Grimes said it is incredible stories like this that keep them helping in any way they can to further the cause of organ donation.
“She (the woman she dialed by mistake) said there’s a reason you’re calling me, I’ve always wanted to pay it forward and pay that person back somehow, but I never knew how I could ever do that…,” Grimes said. “That is a miracle, that is insane and I wouldn’t believe it if it wasn’t me telling the story.”