KANSAS CITY, Mo. -- For the Brainard family, an ALS diagnosis came out of nowhere, but the diagnosis was a long journey.
“It really started with playing catch with a baseball and not being able to use my right hand,” said Chris Brainard.
Last summer, he just felt like a healthy father of two in his early forties. But several months and several doctors later, he said he still didn’t have a diagnosis, including ALS.
“They kind of said 'No we’re ruling that out at this point and time because you’re much too young,'” he said.
His wife Katie pushed for a second opinion. That doctor gave them the news they never wanted to hear.
“She was the one who said, 'Yes I think you all are right. This is ALS,'" Chris Brainard said.
“The average age is the mid-40s,” said Richard Barohn, founder of the ALS Clinic at the University of Kansas Health System.
“But we see patients that have ALS onset anywhere from their 20s to the 70s. It is really a wide range,” he said.
“It is devastating. It takes every part of your body,” Katie said. “He was working, driving, fully ambulatory taking complete care of himself at the end of May to now where he’s totally dependent on a power wheelchair.”
“It's always fatal, so we need everybody to join in this fight,” said Colleen Wachter with the ALS Association Mid-America Chapter. “Right now our numbers are at an all-time high. We’re serving more people than we’ve ever served at any one time. We think a lot of that is because in part because of the ice bucket challenge, the awareness that was created out of it.”
Saturday, the group expects up to four thousand people to help them raise money at the Walk to Defeat ALS.
The Brainards say a team of dozens of family and friends will join them at the walk. They are taking their fight day by day.
“Trying not to focus too far on the future and just kind of live for today,” Chris said.