Two-and-a-half-year-old River Corbit of Gering loves to play with his two older sisters, whether that is jumping on the trampoline, building pillow forts or playing with Barbies. He loves to run, play outside and do all the things that 2-year-olds love to do.
Seeing his energy, you wouldn’t guess that his life for the past couple years has been riddled with doctor visits, tests and procedures.
When he was four months old, River’s parents, Jason and Kristy Corbit, started noticing a few things that seemed off. They began asking questions, which led to a diagnosis of ocular motor apraxia, which is a disorder that affects his eye movements.
Not long after, he was diagnosed with suspected speech apraxia, which makes speaking difficult. Jason and Kristy have begun to teach him sign language as a result.
But something still seemed off.
“It was kind of like an onion, where each place we went, more layers were peeled off to get to the main reason, the root of why he’s dealing with what he’s dealing (with),” they said.
Finally, they had his DNA tested, and they found out in January he was missing part of Chromosome 2, roughly 16 genes were completely deleted.
“There is no cure for that. There is no medical treatment for that,” his parents said. “That was one of the biggest blows (we) would have to say for the entire family.”
Then in May, Jason and Kristy found out about River’s most recent trial: he only had one kidney. River was diagnosed with Joubert Syndrome, which affected the development of his kidneys. He was born with only one, and now that one is in the early stages of failure as well.
“When (we) say a roller coaster, the worst wooden roller coaster anyone can imagine, emotionally,” Jason and Kristy said. “As the parents, there’s absolutely nothing you can do. We can’t fix this for him, and that’s one of the hardest things to realize that you cannot make your boy better.”
Still, Jason and Kristy are doing everything they can to make River’s life better. They’ve been trying to get him into the best facilities to see the best doctors and professionals to figure out what can be done for him. He’s been to Denver Children’s Hospital, Shriners Hospital in Minnesota and Omaha Children’s Hospital.
The Corbits said they are now trying to find someone to tell them if River could receive a pre-emptive transplant.
“That’s our ultimate goal: can he receive a kidney where there is no kidney? We need to get to the doctors that can tell us, does he have the structure to receive the kidney?” they said. “That’s what we’re fighting for. We want to get to that place, we need to find the right doctors that can tell us if that’s possible.”
However, the financial, emotional and spiritual burden has been quite real as they go through this journey to help their son. That’s why their church, Gering Zion, is throwing them a fundraiser on the afternoon of Sunday, July 25.
“Pastor Tim had mentioned to us that they want to do something above and beyond for our family,” the Corbits said. “They commit to pray for River every single Sunday. They pray for him as a congregation where they have his picture up, and they just lift him up in prayer. Jow did we feel? We’re very humbled.”
Though it has been a rough start to life for River, he doesn’t let his condition stop him from living life to the fullest.
“His laughter is so precious, and he is full of life,” his family said. “Full of life. His smile is infectious. Any person that sees him just comments how bright and alive he is … he will run as hard as anyone else, and he will play as hard as anyone else … From sunup to sundown, he literally lives life to the fullest.”
Through all the ups and downs of the journey so far, though, River has reminded his family what life should truly look like.
“River, for us, has pointed out love, patience, kindness, self-control … River is the definition of what someone truly should live life like,” his parents said. “(We) don’t know that many people will understand that, but he’s not letting anything stopped him. (We) think it’s affected (us) more than it’s affected him. … He is our constant calibration, for sure, of what life should be about. That is the truth.”