When you meet 18-year-old Ashton Clark of Poplar Bluff, you see a typical teenager with cool hair sporting his favorite college sweatshirt who loves video games and Star Wars.
What you don’t see are the multiple scars and wounds covering his outer body and internal organs. His long history of doctors visits and surgeries are nowhere to be found in the sheepish grin he gives when recalling the time he told an inquiring store clerk his wounds came from a helicopter fall.
Clark suffers from a rare genetic disorder called Epidermolysis Bullosa (EB). EB is life-threatening and affects the body’s largest organ: the skin. Individuals with EB lack critical proteins that bind the skin’s two layers together. Without these proteins, the skin tears apart, blisters, and shears off, leading to severe pain, disfigurement, and internal and external wounds that may never heal.
Currently, there are no treatments or cures available for EB.
“Having a child with a rare health condition or crisis makes you appreciate the little things and changes your perspective on what is important,” said Clark’s mother, Stephanie. “You realize that each day with them truly is a gift. Watching your child go through things that you can’t control or telling them everything will be ok when you yourself are unsure of that is an unsettling feeling.”
In the summer of 2019, Clark and his family received news during a checkup that he would need surgery. Clark’s legs had atrophied and “stuck” at a 90-degree angle.
The atrophy came from constant wheelchair use.
Around age 8, Clark had to start using a wheelchair because of wounds that developed on the bottoms of his feet which caused extreme pain and the inability to walk normally. He began utilizing the wheelchair to move about school and home.
Clark remembers his arms and hands would get extremely sore and tired from maneuvering the wheelchair and that he began to “pedal” with his legs instead of using his arms.
During that 2019 checkup, doctors determined the constant prior usage of the wheelchair was inhibiting Clark’s bone and muscle health and would lead to irreversible damage if not addressed.
Clark faced surgeries on both limbs and was told his recovery would be lengthy and difficult. That was devastating news to Clark. At the time, he was excitedly gearing up to begin his sophomore year at Poplar Bluff High School.
Clark’s father, Joe, remarked the teen never misses school even when sick, saying, “He gets up and gets after it, never asks why and never complains.”
Clark’s initial surgery was in June 2019 at St. Louis Children’s Hospital, followed by a second surgery in November. In January 2020, Clark was transferred to Ranken Jordan Pediatric Bridge Hospital in Maryland Heights, Missouri, for rehabilitation.
He spent the bulk of January and February 2020 living at Ranken Jordan learning to walk again. Clark said the lengthy hospitalization was very “lonely.” He recalled feeling “left out” of everyday life and “tired all the time.”
On March 5, 2020, Clark was able to triumphantly return to high school and walk into class on his own.
Without the endless support from family and friends who gave him the “faith to want to get through it,” Clark said he would not have “made so much progress in so little time.”
Stephanie Clark said watching her son so gracefully take on every new challenge he is presented with courage and never complaining has made her want to be a better person. “People, myself included, tell him he is our hero and I don’t think he grasps what we mean by that; to have his strength, drive to do things he’s told are impossible and the attitude that he must keep going when things get tough is only a small part of who he is that makes him an inspiration to many,” she said.
“It’s just pretty cool to get to raise your hero,” Joe Clark said proudly of his son. “God made him stronger than the rest of us ... he’s been a blessing (to the entire family) for sure.”
Younger sisters, Kenzie and Kennedy get constant “inspiration and motivation” from witnessing their brother handle life’s obstacles with courage, added Joe Clark.
Clark, who will graduate from Poplar Bluff High School in May is “ready to go to college.”
His future plans include earning a degree from Three Rivers College in Poplar Bluff then transferring to dentistry school in St. Louis.
Clark gives the impression of being pretty laid back despite his challenges. He said his illness has been a “blessing that’s made me a more strong, humble and better person.”
Clark advises anyone struggling with anything to find “peace and don’t freak out” if life doesn’t go as planned, “just focus on the future.”