SANTA FE — Josh Butler loves the mornings.
“My favorite part of the day is the morning when my kids wake up,” he said. “Seeing that precious smile on my daughter’s face and that scowl on my son’s face makes me realize why I’m alive and why I must continue to fight every day.”
And fight is what he does.
Things were going pretty well for Butler in 2010. The former Santa Fe basketball star had been working as a financial analyst in the space program, then he made the jump to teaching and coaching, which he thought was his true calling. He also found out that his wife, Jennifer, was expecting their second child.
Then, on Nov. 11, he was diagnosed with amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease. He was 32.
“He was always very athletic,” Jennifer said. “He played basketball a lot, but he did other sports, too. He mountain biked, he played football and he was very active.
“He had been playing catch with his brothers in the yard and he couldn’t grip the ball as well as he used to. He knew something was wrong.”
But nobody could seem to figure out just what.
“We went to doctor after doctor, and he had carpal tunnel surgery to try to fix it, but it kept getting worse,” Jennifer said.
Finally, the diagnosis came.
ALS is a progressive disease that affects nerve cells in the brain and the spinal cord. As time goes on, muscles atrophy, and patients in the later stages of the disease can become paralyzed.
When he was in high school, Butler was a scoring machine when Santa Fe went to the state Class 4A basketball tournament in 1996, and basketball gave him some of his fondest memories.
“One (of them) is the feeling I experienced just before running out onto the court for warm-ups,” he said. “The combination of nervousness, excitement and adrenaline was definitely a great feeling.”
Today, Butler is in a wheelchair and he has largely lost the ability to speak.
He can communicate, however, with a machine that tracks his eye movements and allows him to type.
“He has an awesome piece of equipment and he can do anything I can do on the computer,” his wife said. “He looks at it and it does whatever he wants. He can type whatever he wants. We have another device where he can type with his eyes and it will speak for him.
“It sounds kind of robotic, but it gets the job done, and we’re so lucky to have it.”
The costs for those devices, along with his doctor’s appointments and medications, add up, so Butler’s friends and family are throwing a benefit for him this weekend. The event will be 1 p.m. to 6 p.m. Sunday in the Ed Pickett Hall, 5700 FM 2004, at Jack Brooks Park. There will be auctions, raffles and a barbecue lunch. Admission is free.
Butler spends a lot of time working on his computer and writes a blog at www.butlers4.blogspot.com. He also gets to see his 4 1/2-year-old son and 19-month-old daughter grow up.
“They love the amount of time he gets to spend with them,” his wife said. “They love having him there and getting to ride on his wheelchair.”
Butler said he has learned much from his experience.
“ALS has taught me many things, most importantly to enjoy the blessings in life and to take the bad with the good,” he said. “It has also made me a much stronger person than I ever thought possible. With faith, hope, courage and perseverance I plan to keep on living a productive and rewarding life.”
Fundraiser for Josh Butler
WHEN:1 p.m. to 6 p.m. Sunday
WHERE: Ed Pickett Hall at Jack Brooks Park, 5700 FM 2004, in Hitchcock