Super Athletic Devyn
KNOWN IN REAL LIFE AS:
GASTROSCHISIS & ARTHROGRYPOSIS
Meet Super Athletic Devyn at the FirstEnergy Akron Marathon, Half Marathon & Team Relay
on September 29.
View a course map.
Meet Super Athletic Devyn
Devyn Emmons, Age 12, from Norwalk, Ohio
Why Devyn is an #ACHero: To care for his gastroschisis and arthrogryposis, Devyn has had to undergo more than 40 surgeries, countless days in the hospital and hours of therapy. Thanks to a team of medical professionals, a loving family and supportive community, Devyn is able to attend school and participate in activities he enjoys, especially sports.
Sidekicks: Mom, grandpa, grandma and Kite, his 4 Paws for Ability multi-purpose service dog
When he’s not busy overcoming obstacles: Devyn loves to play sports and ride his bike and scooter.
Did you know fact: Devyn is a busy athlete. He’s the field goal kicker for the Norwalk Junior Truckers football team and plays basketball, baseball, tennis and year-round soccer!
Devyn’s Story: With 44 surgeries under his belt, 12-year-old Devyn Emmons is no stranger to Akron Children’s. In fact, he’s been the captain of his care team since birth.
“I’m not sure why I started counting (his surgeries) in the first place,” said Crystal Emmons, Devyn’s mom. “When he was in the NICU (neonatal intensive care unit), I think it helped me get through his surgeries – 1 done, 3 to go….I’m thankful we’ve always had a team at the hospital to get us through.”
Devyn’s surgeries started just after birth. Four months before his due date, Devyn went into fetal distress. His umbilical cord was wrapped around his neck. After an emergency cesarian section, physicians acted quickly when they saw Devyn was born with gastroschisis, a hole in the abdominal wall allowing the intestines and other organs to grow outside the body.
“No one knew of his condition beforehand, so physicians used 13 rolls of plastic wrap to protect his organs during his transfer from Fisher-Titus Medical Center in Norwalk to Akron Children’s NICU,” said Crystal. “He needed 4 surgeries and was among the first to use a device to help close his stomach a little each day.”
Devyn also was unable to bend his arms and was diagnosed with arthrogryposis, a congenital issue that causes joints to be stuck in one position or have limited mobility.
After 4 months in the NICU, Devyn was finally able to go home.
For the next few years, Devyn continued to have gastrointestinal issues and surgeries to help his system intake and digest food. He also had more than a dozen surgeries and castings to increase mobility in his arms, as well as his 2 clubbed feet.
“He never crawled, just scooted, until he started walking at age 4,” said Crystal. “Devyn was finally able to bend his arms enough to touch his face for the first time at age 6… It was quite a moment.”
During his time at Akron Children’s, Devyn has taken a flight on Air Bear and spent time with countless doctors, nurses and social workers to get his body and system functioning at a level that allows him to attend school and participate in activities with his peers.
Devyn receives a lot of support from the Norwalk community, classmates and Akron Children’s staff.
“He has a hospital name badge from the security department, so he thinks he’s really official now,” chuckled Crystal. “He loves getting e-cards from friends and family and visits from the volunteers and housekeeping staff while he’s at the hospital.”
Devyn also receives support from his service dog, Kite, who accompanies him to appointments and doesn’t leave his side at home. As Devyn has built up strength and flexibility in his arms, Kite no longer helps him with physical activities like opening doors or cupboards. Kite focuses now on emotional support as Devyn deals with the treatment and limitations of his conditions.
Due to the number of gastrointestinal (GI) surgeries Devyn has had throughout the years, lesions have built up in his system, which have compromised the motility of his GI tract. To keep it functioning, Devyn recently underwent a major GI surgery.
“I’m thankful I have such a great relationship with his doctors that we can talk openly about Devyn’s options, concerns and goals,” said Crystal. “My parents have been my rock through all the ups and downs of Devyn’s care. I don’t know how I’d manage without their support and love.”
It’s taken a huge support team to get Devyn the care he’s needed to thrive and participate in school and sports. As the captain of his care team, Devyn knows staying positive is the best way for him to manage his health.