Colton is an inspiration to those who are lucky enough to know him. In therapy, when Colton meets a challenge he pushes through it. His face breaks out in a big smile. He looks around the room as he’s cheered on by his therapist and family. He even gives himself a congratulatory “good job” in a bright, excited voice and moves on to the next challenge.
Colton’s life has been full of challenges, the first before he was born. Colton was diagnosed with hypoplastic left heart syndrome, which basically means he only had half a heart. There were several courses of action and the family decided on a series of three surgeries. The first surgery was a week after he was born. Colton had a stroke during the operation, which caused cerebral palsy, hydrocephalous and vision issues. All of these complications caused developmental delays. At the time, he couldn’t roll over, sit up or push up onto his hands and knees.
“We had the ‘What to Expect the First Year’ books, and he wasn’t hitting any of the milestones and it was so overwhelming and sad for us, we just put the books away,” Madonna said. “We decided he was going to be on his own pace.”
The first few years of his life were a scary time. Because of the hydrocephalous, he had to fly to Michigan to get a brain shunt implanted. Colton was life-flighted twice from Wichita to Kansas City because of brain shunt failures. He was at risk for sudden death for most of his life.
“Our prayers were just ‘God, let him live, let him live,’” Madonna said. “‘Our cardiologist told us ‘take him home and love him because you don’t know how long you are going to have him.’… That was absolutely terrifying, putting him to sleep at night, kissing him and thinking ‘is he going to be alive the next morning.’”
But Madonna, like her son, doesn’t give up. Colton began to get help with his challenges at Heartspring. He received physical, occupational and speech therapy. Despite all of his challenges, Colton flourished. He can sit up without support, feed himself, walk with a walker, propel himself in a wheelchair and drink from a cup. He expanded his vocabulary and speaks in sentences.
Last January, his cardiologist told Madonna he didn’t think that Colton was considered medically fragile and, in his opinion, the risk of sudden death had decreased, although the risks of heart failure and needing a transplant are still high. His improvements have allowed Colton to enroll in school. Thanks to Colton’s perseverance, his family’s fight and the support of his Heartspring team , Colton keeps surpassing the challenges he meets.
“We look at him and it’s almost like it’s not even the same child,” Madonna said. “What he has achieved is just tremendous.”
