The Wuliger Family

"You don’t want to hear that your child has a medical condition that could affect her for the rest of her life."

Jason and Allison Wuliger learned that their daughter, Naomi, had a rare hearing disorder that could lead to total hearing loss, they wanted answers. But they were shocked to learn that little was known about Naomi’s uncommon condition – enlarged vestibular aqueduct (EVA). Instead of preparing for the worst, the Wuligers joined forces with a second family to raise money, increase awareness and stimulate research. Their efforts have resulted in the EVA Research Project, positioning University Hospitals as a global center for EVA clinical research.

Naomi’s enlarged vestibular aqueduct (EVA) was diagnosed after her parents, Jason and Allison, brought her to UH Rainbow Babies & Children’s Hospital for an unrelated condition. Following a thorough exam, hearing test and CT scan, the family learned that Naomi had hearing loss due to enlarged vestibular aqueducts.

Jason and Allison asked many questions about the cause, treatment and outlook for their daughter’s hearing loss, but Todd Otteson, MD, Chief, Division of Pediatric Otolaryngology, did not have many answers for the worried couple. EVA is classified as an orphan disease because few cases exist – less than 200,000 patients worldwide – so little clinical research exists to explain why it happens and how it progresses.

The Wuligers’ continued to search for answers for their daughter and eventually led them to Mike Tenebruso, a concerned dad from New Jersey who had similar questions about EVA, which affected his son. Jason and Mike met with Dr. Otteson and Cliff Megerian, MD, President, University Hospitals Physician Services; Chairman, Department of Otolaryngology Head & Neck Surgery; Director, University Hospitals Ear, Nose & Throat Institute; and Richard W. and Patricia R. Pogue Chair in Auditory Surgery and Hearing Sciences at UH Cleveland Medical Center, to ask what they could do to help their children and the entire EVA community. Dr. Megerian suggested creating a place where families and physicians could go to find answers – a website dedicated to EVA, including consumer information, a patient registry and a research database.

Through their personal philanthropy and appeals to donors using social media and professional connections – combined with forward thinking by UH physicians and staff – the international EVA Research Project launched in June 2016, holding promise and hope for patients with this uncommon disorder. “We launched the EVA project to find answers and spur additional research,” Jason said. “Thanks to our partnership with the doctors and researchers at UH, we are closer to getting answers for Naomi and the thousands of children like her.”