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Akron Children’s Hero Patients inspire Akron Marathon runners

08-16-2018 (Akron, Ohio )

When the going gets tough for runners in the Akron Children’s Hospital Akron Marathon, Half Marathon and Team Relay presented by FirstEnergy on Sept. 29, they can find inspiration in the faces of this year’s featured Hero Patients from Akron Children’s Hospital.

For the third year, more than a dozen patients were selected to represent the hospital as part of its role as the title beneficiary of the Akron Children’s Hospital Akron Marathon Race Series. The patients, who inspire with their stories of triumph over medical challenges, will cheer runners and walkers along the course.

The patients will be featured in “hero zones” along the 26.2 mile route. Heroes will be accompanied by their parents, siblings and, in some cases, classmates, medical providers and friends at their zones, as well as representatives of the zone’s sponsors.

Meet our 2018 Hero Patients:

  • Rylee Kulick, 9, of Fairlawn, Mile 0.1 and 12.5, sponsored by FirstEnergy. Rylee entered this world at just 28 weeks old. While in the neonatal intensive care unit (NICU), she fought hard to overcome feeding and breathing issues. After nine weeks of continuous care, she graduated from the NICU and has never looked back. Today, she has the lungs of a champion and has no trouble keeping up in the sport she loves most: swimming.
  • Ava and Olivia Lee, 4, of Canton, Mile 2.5, sponsored by Buckingham, Doolittle & Burroughs. Identical twins Ava and Olivia were born 2 months premature and with sickle cell disease. Through regular checkups, proper diet, medications and blood transfusions, the girls put their energy into managing pain episodes caused by the disease so they can focus on doing the things they enjoy most.
  • Tessa Puma, 7, of Northfield, Mile 4.85, sponsored by Crystal Clinic Orthopaedic Center. Tessa underwent more than a dozen surgeries, including a leg amputation and skin grafts, when a rare infection spread throughout her body. With only a 20 percent chance of survival, Tessa not only survived, but also overcame the challenges of walking and dancing on a prosthesis through hours of therapy and ceaseless determination.
  • Layla Popik, 10, of Seven Hills, Mile 6.25, sponsored by Kent State University. Layla was born in China with achondroplasia, the most common form of dwarfism, and adopted when she was 8 years old. She’s put her energy into learning English and overcoming the challenges her condition poses. With a sunny disposition, Layla attends therapy sessions to build strength in her limbs while teaching others the power of positivity through her example.
  • Devyn Emmons, 12, of Norwalk, Mile 6.5, sponsored by The University of Akron. To care for his gastroschisis and arthrogryposis, Devyn has had to undergo more than 40 surgeries, and spent countless days in the hospital and in 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.
  • Jude Sanford, 8, of West Akron, Mile 8, sponsored by Circle K. After suffering a stroke in utero, Jude wasn’t expected to ever walk, talk, see or hear. With a long list of medical impairments and an even longer road to achieving milestones, Jude has overcome incredible odds thanks to his hard work and support from his care team.
  • Jane Sanford, 11, of West Akron, Mile 8, sponsored by Circle K.  Jane has been a constant supporter of her little brother, Jude, since the beginning of his medical journey. While accompanying Jude to doctor visits and therapy sessions, she also worked hard to overcome her own challenges, including attention deficit hyperactivity disorder, dyslexia and a food allergy. Today, she’s still Jude’s biggest fan and is thriving at school, earning high marks for her academics and behavior.
  • Abby Tringhese, 6, of Columbiana, Mile 9.25, sponsored by Stark State College and Vorys Legal Counsel.  At 8 days old, Abby underwent a spinal tap and was quarantined to help her fight a bad case of respiratory syncytial virus (RSV). She was later diagnosed with sensory processing disorder, which took hours of therapy and support from her family to overcome. Abby is now able to handle and process her senses like a champ and is quick to offer a hug or a high-five to her big sister, Hannah, who’s courageously battling a brain tumor.
  • Hannah Tringhese, 8, of Columbiana, Mile 9.25, sponsored by Stark State College and Vorys Legal Counsel.  Hannah was diagnosed with optic pathway glioma when she was in kindergarten. The inoperable brain tumor took away her sense of smell and sight in her right eye, but it didn’t take away her vision to help others. After 40 rounds of chemotherapy, hours of therapy, ongoing sessions with a tutor and a lot of prayers, Hannah’s tumor appears to be shrinking while her enthusiasm for helping others continues to grow.
  • Joshua Detweiler, 6, of North Canton, Mile 9.8, sponsored by Huntington Bank. At age 5, Joshua was diagnosed with ulcerative colitis. The chronic bowel disease requires bi-monthly visits for infusions and some dietary restrictions, but it doesn’t keep Joshua’s spirit down. The self-proclaimed “Colitis Fighter” suits up in his cape each time he comes to the hospital where he fights his battle against colitis and brings happiness to those around him.
  • Levi Detweiler, 4, of North Canton, Mile 9.8, sponsored by Huntington Bank. Born 1 month premature, Levi suffered a brain injury at birth and wasn’t expected to live. After 17 days in the neonatal intensive care unit (NICU), a cerebral palsy diagnosis and three years of outpatient therapies, he has defied the odds. Thanks to his solid support team, spunky personality and hard work ethic, Levi approaches preschool, therapy and everyday life with courage and compassion.
  • Emmie Wanzer, 6, Jackson Township, Mile 10.4, sponsored by Pediatric Palliative Care Family Fund. At age 2, Emmie woke up from a nap with transverse myelitis, which took away her ability to walk and move from her neck down. Through strong will and the help of doctors, therapists and equipment adaptations, Emmie has learned to operate a wheelchair and mouth stick with her head to gain independence and participate in school and dance.
  • Maritza Harper, 13, of Munroe Falls, Mile 17.8, sponsored by Akron Children’s Hospital’s Women’s Board. Maritza was in first grade when her name was added to a kidney transplant list. For 8 months she underwent dialysis, adhered to a strict diet and took daily medications while she waited for a match. A year after her transplant, she had to undergo anti-rejection treatments to help her body accept her new kidney. Thanks to her resilience, medical care and family support, Maritza has reached the five-year mark with her new kidney and is enjoying school, sports and friends.
  • Beckett Christy, 8, of Stow, Mile 19.2, sponsored by Metis Construction Services. Born with Down syndrome, Beckett has put in hours of physical and occupational therapy to achieve milestones like eating, walking and talking. Despite the challenges his disorder may cause, he never complains or quits trying. He attacks each day with his signature smile and positive spirit, making those around him proud.
  • Joe Gavriloff, 16, of Kent, Mile 25.6, sponsored by Legacy Strategic Asset Management of Wells Fargo Advisors and Oswald Companies. Joe was diagnosed with severe hearing loss when he was 5 years old. He’s never looked at his impairment as a setback; instead, he sees it as something that makes him stronger. While his hearing does pose some everyday obstacles, he doesn’t let it stop him from doing the things he enjoys like playing football, achieving high academic marks and serving as a role model for younger kids with a hearing disability.

For more information about these hero patients and their stories, go to http://www.akronmarathon.org/meet-our-heroes/.

To see the Hero Patient video, go to https://www.youtube.com/watch?v=CdjNK6WQ9Z0

Information for runners who are interested in learning more about raising money for Akron Children’s as a Children’s Champion is available at http://giving.akronchildrens.org/site/TR?fr_id=1100&pg=entry

Registration is still open for in the Akron Children’s Hospital Akron Marathon, Half Marathon and Team Relay presented by FirstEnergy on Sept. 29, and volunteers are always needed. For more information, go to http://www.akronmarathon.org/