Spinal muscular atrophy and an Architect Designer

I met Stu Soneson this summer at a regional Joni and Friends Family Retreat for people affected by disability. Soneson has spinal muscular atrophy, which a National Institutes of Health website describes as a hereditary disease causing “weakness and wasting of the voluntary muscles in the arms and legs of infants and children.”

All this, and yet he has led a “normal” life.

⤥ Summer Fun Starts Here ⤦

⤥ Summer Fun Starts Here ⤦

⤥ Summer Fun Starts Here ⤦

⤥ Summer Fun Starts Here ⤦

“It was great growing up,” said 48-year-old Soneson in a telephone interview. “I had a great time. My family and friends treated me like I didn’t have any kind of physical problem. I had great friends at school and church. My family made sure I did all the things a little boy would do growing up. I water-skied on my dad’s knees. I climbed mountains riding on my dad’s or brother’s back. I swam in both oceans before I was in college.”

Yet in kindergarten, he could barely stand through the Pledge of Allegiance. In first grade, other students began pulling him around in a red wagon, and in second grade, he started using a wheelchair. His classmates readily accepted him.

“I tended to not think of myself as being different,” he said, “and that probably helped other people not think of me as different.”

At age 12, he dreamed of being an architect. He eventually earned a degree in architecture at a Big Ten school and in 1990 started a successful career with Ellerbe Becket, a multi-national architectural firm.

“People are surprised to learn I’m an architect,” he said. “I don’t think they expect much out of someone in a wheelchair. But I design very large, multi-million dollar hospitals.”

To get around, he uses an electric wheelchair and has a “stick” to reach elevator buttons. He has a full-time care attendant who drives his van and helps him at home to transfer to and from his wheelchair. He lives next door to his office, which helps greatly. Also, Soneson credits his faith for giving him hope.

He also feels strongly that people with disabilities should make every effort to have and maintain employment.

His advice: “Countless times I could have folded up and called it a day. It would have been easy to give up. But there’s a lot of life to live out there. If I didn’t have hope in life, quitting would be easy to do.”