HEIDI OPDYKE

Both brothers have spinal muscular atrophy, a progressive neuromuscular disease that restricts the use of their hands and requires them to rely on breathing equipment and wheelchairs. Their compromised immune systems cause them to be careful about germs — even a cold could be fatal.

“The disease does progress very slowly,” Andrew said. “We’re fortunate it’s been a really slow progression.”

Muscular atrophy has not stopped either brother, however, from excelling in their chosen fields. Henry, 35, started as an undergraduate in SCS in 2003. After being accepted, he and his parents met with Mark Stehlik, then assistant dean for undergraduate studies, Larry Powell, then director of the Office of Disability Resources, and Mike Murphy, then Dean of Student Affairs.

“I was so impressed with this kid and his desire to learn. What educator wouldn’t love that?” Stehlik said. “As a university, we should help brilliant minds advance independent of any other considerations.”

Stehlik worked to find ways to help Henry participate in classes. One way was figuring out how to allow him to attend courses in Wean 7500, where many Computer Science courses — including Introduction to Computer Systems — take place. At the time, the auditorium had no place for Henry to safely park his wheelchair, which is longer than most. Stehlik worked with Jim Skees, then director of SCS building facilities, to cut a vertical slice out of a retaining wall and build a platform where Henry could park his wheelchair.

“The Henry DeYoung notch survives to this day,” Stehlik said.

The willingness of faculty and staff helped make the transition to college possible. Henry would introduce himself to professors before classes started to discuss his situation and find ways to participate as much as possible.

“It’s a testament to the creativity of people at CMU. Many of them said, ‘We’ve never done this before, but we’ll figure it out,’” said Henry. “In my experience, everything went really smoothly. Mark Stehlik was welcoming, but so were all of the individual professors that I had for my courses.”

When Andrew looked at colleges, he applied to the University of Pittsburgh and MIT — his father’s alma mater — but CMU was at the top of his list as well.

“I was hoping I would get accepted. I knew I wanted to go there,” Andrew said. He started in the Mellon College of Science's Chemistry Department in 2005 and graduated in 2010 with a 4.0. “CMU’s culture of openness is really what made all of this possible,” he said.

Karen Stump, teaching professor and director of Undergraduate Studies & Laboratories in the Chemistry Department, has advised students for more than 20 years. She said that Andrew will remain one of the most impactful students she’s ever worked with, both personally and professionally.

As an undergraduate, she worked with him to find a way for him to participate in lab courses. The solution involved having a graduate student to act as his hands, while he provided the direction for every step of each experiment.

“The graduate student became his hands,” said Stump. “All three of us were very clear it was going to be Andrew directing. So Andrew would tell her specifically what to do, and she had to hold back if she knew it was wrong in terms of techniques or outcomes of the experiment unless there came a point where safety had to be taken into consideration. And in that way he was able to make mistakes.

“He was such a great partner in that process and very willing to do what he could because he wanted as much of an experience as he could get that mimicked what other chemistry majors got.” Working with Andrew influenced Stump and other faculty members to reconsider what it means to be in a lab for a student and how to develop courses.

“When I first met Andrew there was a lot of thinking in my head, ‘What does this mean?’ and ‘How do we do this?’” Stump said. “For most of us who worked with Andrew, we now go right away to the problem-solving moment. It was such a wonderful experience. 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.”

Catherine Getchell became the director of the Office of Disability Resources after Powell retired in 2016. By then, the DeYoungs had been part of the community for more than a decade. Less than one percent of CMU students have permanent disabilities related to mobility, but she said that the DeYoung brothers’ ability to self-advocate and initiate conversation with faculty is something all students with and without disabilities can learn from.

“Students can reach out to the office at any time,” Getchell said. “If they know they’re coming to CMU and that they may require accommodations for a disability, we urge them to contact our office. They can also contact us as prospective students. A discussion with us about our services and the accommodations process may help them make their decision. We won’t be able to make final decisions on any accommodations until after they accept admission, but we will happily talk about what they might need and what the options are.”

Getchell added that no deadline exists to receive accommodations, although the sooner students reach out, the more impactful their accommodations will be.

The ability to succeed at school for both Henry and Andrew was a family affair, which included their parents, David and Joan DeYoung, and nurses and volunteers who helped them with day-to-day activities.

“Our days are incredibly shorter than most students,” Henry said. “There’s less time for work.”

Daily routines include breathing treatments in the morning and evening as well as getting into their motorized wheelchairs. Because of their limited mobility, they dictate assignments to their parents or others to type.

“I will not pretend to understand what a day in the life of the DeYoung household is like. I will assert that it was not easy and pretty damn hard at times,” Stehlik said. “It was their collective will and desire to succeed. It was an example of a struggle surmounted in a very good positive way. I’m glad CMU played a small part in that.”

Henry graduated with his bachelor’s degree in 2008 with a 4.0 before starting his graduate studies. His graduate adviser was Computer Science Professor Frank Pfenning. Because of Henry’s compromised immune system, the two have met virtually since February 2019, the last time Henry was physically at the Pittsburgh campus.

“Over all these years, it’s been a real delight in working with him,” Pfenning said. “Henry is very smart, dedicated and detail oriented. He has a love of research and inquiry and answering very fundamental questions.”

Being a doctoral student is not just about being smart, Pfenning said. “It’s originality that you need and to go where no one has gone before and forge your own path.” For Henry’s thesis, he studied proof theoretic foundations of session-typed concurrency. The work relates to understanding the relationship between logic and computation and how multiple computers communicate through protocols.

“It’s significant work that will have an impact,” Pfenning said. “I’m really proud of what he accomplished. For any student to do this kind of work and write this kind of thesis is a great accomplishment. That he was in the circumstances he was just adds to that.”

Andrew works in Chemistry Professor Hyung J. Kim’s lab. Kim was department head when he started as an undergraduate.

“Andrew is one of the most brilliant students I have had,” Kim said. “He’s probably the most conscientious worker. He always has followed up on whatever we discussed and things I mentioned in passing. He has been great, and he pays attention to all of the details.”

Andrew’s thesis related to theoretical work on molecular dynamics simulations. He studied energy storage systems, in particular carbon-based super capacitors.

"Super capacitors are like batteries but are able to charge and discharge more quickly. One application of super capacitors is in electric vehicles," Kim said.

Kim said that Andrew has been exceptionally motivated to do research.

“When I took Andrew into my group, I was concerned because of his physical limitations and how much he can do. But he really put in a lot of effort, and his will was really strong,” Kim said. “That’s how and why he is where he is today.”

Both Henry and Andrew will likely continue to be part of the CMU community. Henry recently began postdoctoral research with Pfenning, and Andrew is in making similar arrangements with Kim.

“I would love to continue to work with Andrew,” Kim said. “I really like interacting with him on science.”