When playing sports, players look for ways to find a competitive edge. Extra practice, film study, workouts or better equipment are all ways to gain a fair advantage over your opponent. But what if you began at a disadvantage? For Ethan Johnson, his passion for the sport of hockey was being hampered because he was unable to skate like his teammates.
Ethan was diagnosed with bilateral clubfoot when he was born. Ethan went through weekly casting, tenotomy and then used ponseti shoes and bar to correct his legs. But after 15 months, Ethan still wasn’t walking or standing up. This led parents Elliot and Sarah Johnson to meet with a specialist at Gillette Children’s Specialty Healthcare. After meeting with Dr. Stephen Sundberg, a pediatric orthopedic surgeon, the doctor explained that it was not clubfoot as previously thought, but arthrogryposis. Arthrogryposis is a rare condition that causes tightening in joints forcing them to be bent or flexed restricting movement.
“Arthrogryposis is a difficult diagnosis for a family to receive in the sense that the picture of what the future will bring is not always complete or clear at the outset,” Sundberg said. “Rare pediatric medical conditions often present unique challenges for each patient, but at Gillette, I hope our families feel reassured in the knowledge that many conditions that would be rare at other health care facilities, aren’t always rare for us. Treating many of these conditions is precisely what we specialize in. Arthrogryposis is not a progressive condition, so Ethan’s eventual outcome looked very positive, but he would require surgery to help him be able to walk going forward.”
As Ethan grew older, he began to participate in sports with other children his age. Trying several different sports, Ethan found that he enjoyed hockey. But as practices and games went on, Sarah noticed that Ethan was having a difficult time keeping up with his friends on the ice.
“He was having a hard time skating because his foot is turned, so he was skating on the outsides of his blades,” Sarah said.
During one of Ethan’s physical therapy sessions, the talk turned to Ethan’s play on the ice.
“He was seeing Jasey Olsen at Lake Region Healthcare for physical therapy,” Sarah said. After talking, Sarah discovered that Olsen was a girls’ hockey coach and asked a few questions regarding Ethan’s skating.
“She mentioned to me that with how he is walking on the outsides of his feet, if he skates that way too, he’ll never be able to get any lift off the ice to be able to skate properly,” Sarah said.
That is when they decided that they would contact Gillette Children’s Speciality Healthcare in Alexandria and scheduled an appointment with Dr. Andrea Paulson and orthotist Ross Huebner. Paulson was a former college hockey player, while Huebner also played hockey in his youth. The two met with the Johnsons and came up with a plan to help Ethan’s skating.
Previously, Ethan was wearing ankle-foot orthoses (AFO) to help aid his movement. AFO is usually fitted to be worn within a shoe. Huebner remembered what it was like to wear hockey skates and how tight they can be. After getting a bigger boot to fit a wedge inside, Huebner created an exterior brace to go on the outside of the skates while Ethan wore them.
Through four appointments and in a span of over six weeks, Ethan received his braces. They are the first kind Huebner made.
In just a short amount of time, Ethan’s play and enjoyment of hockey improved. After an initial struggle, Ethan went to the rink and practiced with a walker. But after a bit, Ethan put the walker aside and began skating without it.
“He is able to push off on the ice, he can now skate on one foot, which he couldn’t do before. He has a lot more confidence,” Sarah said.
Recently, Sarah, Ethan and Ethan’s brother, Reid, traveled to Target Field representing Gillette kids to make the honorary first run at Minnesota Twins Sunday home games through the season. Normally, Ethan would have gone to the game to and run in front of a crowd, but due to COVID-19 six kids and their families were invited to film their run around the base pads and have it shown on the Jumbotron. Ethan’s run will be displayed at the April 25 game as the Twins take on the Pirates at 1:10 p.m.