Kevin Story and his Club Foot disease

“When I saw Kevin at his six month exam, I was extremely pleased with his outcome. He’s walking almost 100% independently, maybe hand holding by his mom; is it perfect? No. But he’s wearing shoes and he’s walking and he has his feet. So that’s a success,” said Dr. Daniel Hatch.

Kevin was born with Moebius syndrome, which means he’s unable to smile, blink, grimace, or make any kind of facial expression. Children with Moebius syndrome can also have club foot. Kevin has bilateral club foot, meaning it affects both of his feet

Like many patients with club foot, physicians tried to correct his feet by placing his legs in serial casts; unfortunately this was not successful for Kevin.

“We probably did about four sets of serial casting, which means up to six months of being in a cast, when we finally said, no more, he’s probably not going to walk, and he can be in a wheelchair and we will be okay with that,” said his mom Kacie.

Kevin’s parents were resigned to the reality that he would never walk, but Kevin had a different plan.

“Kevin was seven when he started showing signs that he wanted to walk. He started pulling to stand, climbing onto furniture, asking for our hands to walk around, but his feet were so turned in and so deformed at that point, he did not have a good base to stand on,” said Kacie. “As we were looking for answers and searching for what to do next, we consulted a surgeon who recommended amputating Kevin’s feet because he felt that Kevin might have a better chance walking with prosthetics. We knew that wasn’t the answer.”

Determined to find a solution, Kacie contacted podiatric foot and ankle surgeon Dr. Daniel Hatch with Foot and Ankle Colorado, who had treated Kevin in the past to see if anything could be done.

“The procedure for Kevin that we elected to do was the use of external fixation. It’s done very gradually, with one millimeter a day adjustments and has proven to be very successful with this type of deformity,” said Dr. Hatch.

“When I first saw Kevin’s feet in the fixators I thought what did I get myself into?” said Kacie. “Adjusting the fixators for the first time was very scary. I thought I was going to hurt him, but that wasn’t the case.”

Kacie, Kevin's mother

With a careful therapy regiment and Kevin’s determination, a 10-year-old little boy who had never walked soon found himself up and about.

“If I was going talk to another parent about the fixators, I would definitely tell them that it is a long road. It is not easy but it is so worth it,” said Kacie.

The patient stories above show an individual’s response to treatment. They are not intended to provide any indication or guarantee of the response other people may have. Please consult a qualified medical provider for diagnosis and treatment.