OKLAHOMA CITY, Okla. (KFOR) – “Every ride’s different,” Randy Crawford said. “And you’re along for the ride.”
Life is not always a marathon; for Randy, it is a race.
“And it’s just hang on,” he said.
Randy’s race should have ended long ago, but he is still racing – against time.
“He was a day old, and they came in and said that something wasn’t right,” his mother, Brandy Crawford, said. “He was blue. He wasn’t breathing right, and they immediately took him from Ada in the helicopter to OU.”
Randy’s father nearly beat the helicopter there.
“I was not expecting to see my son cut open like he was,” Roger Crawford said. “It was devastating. It was one of the worst damn days of my life.”
Randy was born with Hypoplastic Left Heart Syndrome and underwent two surgeries by four months of age and then another, but there were complications.
“His lung collapsed, and just didn’t come back,” Brandy Crawford said.
Little did anyone including doctors back then know that the very surgery that saved Randy’s life in the beginning would come with dire consequences down the road. Three years ago Randy was diagnosed with liver cancer caused by the Fontan procedure – the only life saving surgery for babies with Hypoplastic Left Heart Syndrome.
“He’s developed liver disease that we see in a lot of fontan patients as they get older,” Dr. Charles Sperrazza, a pediatric cardiologist at OU Children’s Hospital, said.
“At the time I didn’t even know that that could come about,” Randy’s mother said. “I had no idea why this was even happening to him, but as I got to researching a little bit it’s happening to all the hypoplastic kids, not all but the majority. There’s a group on facebook, and there a lot of kids that are having liver failure from their fontan surgery.”
Randy is in heart and liver failure.
“We try to manage his symptoms, keep him comfortable, and let him do what he likes to do,” Sperrazza said.
There are trials and experimental treatments, but Randy does not qualify, because he has only one lung. Many Fontan patients get a heart or a liver transplant, but Randy is not a candidate for those either. He has turned down Chemotherapy.
“They told him to go live his life, because there was nothing else that they could do.,” Brandy Crawford said.
“They told me that I would have a longer and better quality of life if I kind of stayed away from it, but they offered it,” Randy Crawford said. “It was our decision.”
Doctors told Randy the end result would be no different, yet his race speeds on to another of life’s major mile markers – high school graduation. His childhood buddy, Jonathan Wiseman, gave the valedictorian address.
“My best friend Randy Crawford has made a huge impact on my life,” Wiseman said. “I’ve watched him take the situation he’s in and make the best of life. One day I walked into his room and saw a booklet. It was for him to write his will if he were to die. We both shed some tears and didn’t know what to think. I grabbed the booklet and put it away.”
What is next for Randy?
“Look at our race budget, and see what we’re going to get to do this summer when he gets out of school,” his father said. “You got a better plan than that?”
“No,” Randy Crawford said.
For years Randy has been selling shirts and hats with his logo on them – Mud Racing, Inc.
“It’s nothing fancy,” Randy Crawford said. “We don’t have a website or nothing.”
He gives all the proceeds and his race winnings to other cancer patients. He is making the most memories and the most of life – the very meaning of living in the moment.
“I don’t know personally how these two do it, because as a parent you watch your kids grow up, and you want the best for them and to see them succeed. To have something happen to them that you can’t do anything about, I don’t know how they do it,” Randy Crawford said of his parents. “I really don’t. I don’t know how you all do it.”
“I don’t either,” his mother said. “We just do.”
Every day is a gift, and every race is a victory.
“There’s nowhere to go but forward,” Randy Crawford said.