When Oakley was born, they couldn’t figure out what was wrong. His mom, Allison, explained that doctors finally determined he had something called Med12 associated syndrome.
He was one of three known cases in the world.
Because of that, it was a constant battle to figure out what to do. Oakley was sick all the time. Really sick. The only organs in his body not affected were the liver and the pancreas. “We took it one step at a time,” says Allison. That’s all she could do.
One winter morning, Allison took Oakley for some routine tests. They had to get his lungs cleared out every so often. While in the hospital, the doctors decided to do an MRI to figure out why Oakley was having hearing loss. Instead, they found a brain aneurysm.
Immediately, Oakley was admitted to the hospital. Two surgeries to repair it turned into six surgeries. He faced many complications, infections and obstacles, but you wouldn’t know it from interacting with him.
“He was such a happy guy, not a care in the world,” says Allison. “He smiled through anything. It didn’t matter what. In fact, everyone fell in love with him. When most kids had to be held down for procedures, Oakley just smiled. He was the happiest little thing.”
How Vivian’s Victory Helped
Allison met founder and CEO Maria personally through a mutual friend (Oakley was an early Viv’s Kid, so there wasn’t the formal application process). “I’ll never forget the day I met Maria,” says Allison. “She came into the ICU and introduced herself. Just then, Oakley started having a seizure.”
Through gas cards and cards for groceries, Vivian’s Victory helped Allison survive the many surgeries Oakley faced, which kept her in the hospital with him and out of work. “I didn’t know what I was going to do. I couldn’t leave him. I needed help.”
Twenty-three hours after he got home though, Oakley stopped breathing. He was 20 months old. Since Allison’s an EMT, she was able to get him breathing. When it happened 30 minutes later, though, she called for help and they raced back to Cincinnati Children’s. There, she said goodbye.
“When he died, Vivian’s Victory paid for his casket,” says Allison. “That really meant a lot. He was so tiny. The only thing that fit was a white casket for an infant, but that wasn’t right. Vivian’s Victory found just what I needed, and took that off my shoulders.”
Now Allison is starting her own non-profit on Oakley’s behalf. “It’s amazing what connections you make and how people reach out and help you. People still reach out to me. A woman I know named her son after Oakley. She told me he was a true inspiration, the type of person she wants her son to be.”
She’s not the only one who feels that way. Vivian’s Victory is proud to call Oakley a Viv’s Kid!