When doctors didn’t think Ken Brown had much longer to live, a special, early ceremony in March fulfilled the Champlin dad’s wish to see his son graduate from the University of Minnesota. Now, his family grieves.
Ken, whose battle with amyotrophic lateral sclerosis (ALS) was featured in a Star Tribune article in March, died Monday after a 3½-year battle with the fatal neurological disorder. He was 54.
Shocking everyone, including his medical team at the Minneapolis Veterans Medical Center, Ken did make it to see his son Collin’s official graduation in May, two months after doctors expected him to die.
“That early graduation and an extra dose of God’s grace gave him a second wind to make it to May and the actual commencement,” said Ken’s wife, Patti.
Ken was born May 20, 1963, in Chicago. He grew up in Iowa and attended Iowa State University, earning a degree in industrial engineering. He used his engineering skills throughout his battle with ALS to invent several devices to help him live more effectively, among them, a special ladder Ken could use to hoist himself up when he fell.
After college, Ken went into the Air Force, where he met Patti, who was a nurse. They married in 1989 and had two children, Keegan and Collin.
Ken was athletic throughout his life, excelling as a body builder and a runner. It was during a typically easy run — that Ken struggled to finish — when he knew something was wrong.
In 1997, Ken started working at Boston Scientific. He continued working two years after his diagnosis, far longer than his medical team at the VA hospital had seen anyone with ALS work.
“He had a strong will to live, pushing through several points where providers thought he wouldn’t make it,” said Patti.
With two kids graduating soon, Ken and Patti put plans in motion for how they’d spend their extra time together.
They took up ballroom dancing through their church and started riding motorcycles.
The Browns’ plans for how their life would unfold as empty-nesters changed abruptly when Ken was diagnosed with ALS in February 2014.
Despite the devastating change of plans, Ken was adamant that he live the remainder of his life on his terms.
He vacationed with family, swam, biked and ran as long as he could, and volunteered on a church mission trip to help with a construction project for a girls’ orphanage in Guatemala.
“I was so impressed by his faith in God, and his ability to look beyond the disease and live life to the fullest under the worst of circumstances,” said Kristi Juen, a co-worker of Ken’s.
Family friends say Ken and Patti remained loyal teammates to the end.
“One of the most pressing challenges about this disease is that it doesn’t stop until everything is taken from you,” said a friend of Ken’s, Dan Johnson. “Ken and Patti walked hand-in-hand even in these agonizing last few weeks.”
Instead of turning inward as the disease progressed, Dan said Ken’s faith and sense of humor became potent forces for fighting the disease.
He volunteered for ALS research studies and throughout his battle with ALS, “Ken’s Crew” was active in raising money for ALS research.
On Ken’s CaringBridge page, the couple didn’t shy from sharing their harsh realities.
After a rough day when they knew the end was near, Patti described the impossible paradox of ALS: “It occurred to me that night that I didn’t want Ken to die, but that I wanted it to end.”
Services will be held at 2:30 p.m. Thursday at New Hope Church. Visitation will be from 1 to 2 and again at the end of the service.