During finals last week, Kyle Hicks, 24, sat at a sliding table in his northwest Wichita home as he pecked at the keys on his computer with blister-covered hands.
His fingers are webbed together, so he looks down as he hits the letters with bandage-covered hands, one by one. Bandages cover most of his 4-foot-2-inch frame, which weighs just 58 pounds.
But this past weekend, Hicks celebrated his graduation from Butler Community College with an associate’s degree in liberal arts. He was born with a rare and painful skin disease called recessive dystrophic epidermolysis bullosa. The disease makes his skin extremely fragile and covers his body with blisters.
When he speaks, his optimism about life quickly becomes evident.
“I’m hoping that maybe by the time I finish college, my skin will be a lot better by then,” he said. “Maybe just in time for me to go into the workforce. Maybe it’s meant to be for college and my progression of health.”
He took classes online at Butler and plans to continue online at Kansas State University this fall for his bachelor’s degree. Hicks said he’s a Jayhawk and Shockers fan but that Kansas State offered the best online program.
“I’ll go where I need to go for my education needs,” he said.
But eventually, he wants to be physically in the workplace, just like anyone else.
“I might start out working from home, maybe as a first job,” Hicks said. “But truthfully, I don’t want to work from home, I want to go out.”
Hicks lives with his mother Jerree Hicks, who fixes computers for the Wichita school district. She makes him breakfast, comes home to make lunch and wraps his bandages after work each day.
She described Hicks as determined and persistent about what he wants in life.
“He was never supposed to leave the hospital, and he did,” she said. “Now he’s 24 and has had a transplant. And hopefully, in time, the sores and bandages will go away. I never thought we would be here.”
Bone marrow transplant
When Hicks starts school each day, he sits in a black reclining chair with his laptop placed on a sliding table in the living room, his walker by his side. He hits each key with his right hand.
“I do the opposite of what you’re supposed to do,” he said. “I don’t look at the screen, I look at the keyboard. I type pretty fast once I get going.”
His work station sits in front of a large TV, which takes up most of the living room wall. He said online classes can get lonely. He spends most of his time in his living room or bedroom.
In his free time, he said, he likes to watch “Modern Family,” “Dateline” and the “Tonight Show.” But most of all, he loves to watch the Investigation Discovery Channel, a documentary-style crime station.
“I can’t live without that,” he said. “It’s so sad that people have actually died and we watch and think of it as entertainment. It’s bad, but it’s good-bad.”
In June 2011, Hicks went to Minneapolis for a bone marrow transplant as part of a clinical trial. His disease is rare, so doctors don’t have a guaranteed way to cure it. Hicks said the sores aren’t as deep as they were before the transplant, but the pain persists.
He said the new skin has to form in layers, but as his skin gets stronger, his nerve endings change. Hicks said he used to have a constant dull pain before the transplant but now has sharper nerve pain in waves.
“I don’t want to have a bad image of the transplant,” he said. “I don’t want to make it seem like it’s a bad thing, because it’s a good thing. But I’m feeling a lot different pain and a lot worse, because the nerve pain is something I hadn’t felt before. But it’s a good thing that that’s happening.”
Hicks’ fingers started webbing together when he was about 2. For most of his life, he received surgery to separate his fingers. But eventually, the skin would web together again, causing Hicks to get surgery every summer – alternating hands each year.
Hicks has not had the use of his fingers since a couple of years before his transplant, because his doctors want him to wait until his skin grows stronger before again having surgery to separate them.
Now, Hicks’ blisters are mostly surface sores and come in phases. Hicks said nerve pain usually hits during the healing phases rather than breakouts.
“Just like me going through school, it’s a process,” he said.
Hicks said he plans to major in business at Kansas State but hasn’t decided on a subcategory. He said he’s interested in pursuing a career as an Americans with Disabilities Act compliance officer.
Teresa Eastman, the compliance officer and director of disability services for Butler Community College, has not met Hicks in person but has worked closely with him during his time as a Butler student.
“Someone that has walked the walk is great for that position,” she said about Hicks wanting to join her field.
She called Hicks witty and inspiring.
“He is just incredible to persevere through what he has gone through and still take classes,” Eastman said. “He is an amazing kid.”
Hicks started at Butler in 2010 but took time off periodically.
“I wish it had taken me less time, but to get to that point still makes me really happy,” he said. “It’s better late than never.”
Tiffany Batchman, a family friend for 11 years, said she always knew Hicks would finish school but that she’s proud of the man he has become in the process.
“He’s not a kid anymore. He may look like it, but he definitely is not,” she said. “As you see him grow and become the intelligent, smart young man that he is, you don’t take his size into account.”