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Brothers With SMA Complete Their Doctorates Weeks Apart

Written by Megan Cawley
Posted on January 11, 2022

  • Andrew and Henry DeYoung, brothers with spinal muscular atrophy (SMA), completed doctoral theses at Carnegie Mellon University within weeks of one another.
  • They credited their success to help and support from their families, the university, and fellow students.

Achieving a doctorate is an exceptional accomplishment in its own right. But brothers Henry and Andrew DeYoung successfully delivered their doctoral theses within weeks of each other in 2021 — and both brothers live with SMA.

Andrew and Henry graduated from Carnegie Mellon University with doctorates in chemistry and computer science, respectively.

As CMU’s campus newspaper The Piper noted, the brothers achieved their goal thanks in part to the support of their parents, nurses, professors, and Carnegie Mellon administrators. Due to having SMA, they both require breathing equipment and power wheelchairs. SMA has restricted the use of their hands and has left their immune systems severely compromised.

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Henry’s professors recalled how, when he started at Carnegie Mellon in 2003, he would approach them after every class, explain his situation, and try to find ways to participate and contribute as much as possible. And when one of the university’s buildings that housed many computer science courses was unable to accommodate Henry’s wheelchair, faculty and staff came together to find a solution.

Then Mark Stehlik, assistant dean for outreach, worked with Jim Skees, director of building facilities, to carve out a platform on which Henry could park his wheelchair. As Stehlik told The Piper, “The Henry DeYoung notch survives to this day.”

Henry’s brother Andrew later followed in his footsteps, entering Carnegie Mellon as a chemistry major in 2005. Karen Stump, a teaching professor and director of undergraduate studies and laboratories in CMU’s chemistry department, called Andrew one of the most impactful students she has ever worked with in her 20-year career.

Andrew and Stump collaborated on how to ensure he could adequately participate in and get the most out of classes, including having a graduate student act as his hands during laboratory assessments. Andrew directed the student throughout these assignments. The student took care to avoid stepping in if she noticed Andrew making a mistake, as this would ultimately allow him to learn.

“For most of us who worked with Andrew, we now go right away to the problem-solving moment. It was such a wonderful experience,” Stump told The Piper. “Andrew helped us realize that there’s value in education for everybody, and there are creative ways to accomplish your goals while also meeting the needs of the students.”

The DeYoungs’ experiences, as well as their ability to advocate for their needs and discuss them with the CMU faculty, helped to influence the university’s higher-level administrators. Catherine Getchell, director of the CMU Office of Disability Resources, said that the brothers’ willingness to speak up and seek assistance sets an example for students and faculty alike, encouraging students to seek out accommodations if necessary and the faculty to be open to providing them.

Posted on January 11, 2022
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Megan Cawley is a writer at MyHealthTeam. She has written previously on health news and topics, including new preventative treatment programs. Learn more about her here.

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