For Andrew and Christina, 95 had become a daunting number. There was only a 5% chance their son would survive. At least, that’s what the doctors said. Their son Luke had campomelic dysplasia (CD). The fatality rate was an alarming 95%.

But fast forward 17 months, and he’s defying all the odds, even surpassing every milestone.

“Most people would say, I'm not going to go against those odds,” his dad Andrew says. “But Luke did.”

CD is a rare genetic condition that affects Luke’s bone growth and ability to breathe on his own. Some doctors only see it once in their careers. What makes Luke’s case even more unique is that neither of his parents have the gene which typically causes it.

Despite Luke’s odds, they believed in him.

They grew to hate the phrase “manage your expectations.” They would talk about Luke’s future, but doctors would constantly tell them to prepare for the worst.

As an infant Luke had surgery to straighten his legs and feet. Doctors said he may never walk. Now they are confident he will.

“There's what the doctors tell us, and then there's what Luke and God do,” his dad says.

Luke came to La Rabida from a local major medical center when he was just four months old following two big surgeries. He needed a tracheostomy to breathe and a g-tube for nutrition.

At La Rabida, Luke flourished. He stayed aboard the S.S. La Rabida until he was nearly one – a milestone doctors feared he’d never reach.

His family says nurses made sure he was not only cared for, but he never felt alone. Because they live nearly two hours from the hospital, they were worried their son would be lonely. But nurses spent time with him by singing, dancing, and playing rhythm and blues songs.

“I just really appreciate the humanity of the staff and their compassion,” Andrew says.

With his family by his side now at home, Luke continues to beat the odds, and the training his parents received at La Rabida has been a literal lifesaver.

“We learned a lot at La Rabida because we were able to, in the moment of two separate ‘decannulations’ at home, push aside our parent panic and do what we were trained to do,” Andrew says.

“Our boy is alive. I will never take that for granted, no matter how difficult the road gets,” his mom says.