Meet Daniel
When Daniel was only 10 months old, his father Ian noticed white flecks in his eyes. Up to that point, Daniel had been a healthy baby. Those flecks turned out to be blood cells. His immune system was attacking his eyes. Daniel’s mother Michelle was crushed. If her son was showing signs of having the same eye disease she had, he would likely lose his hearing as well.
Michelle was 3 years old when she was diagnosed with progressive neurosensorial hearing loss at Nationwide Children’s Hospital. As she slowly lost her hearing and vision, Michelle and her clinical team worked hard together to give her the best possible outcome. She received cochlear implants as a young woman, which allowed her to hear by bypassing the damaged parts of the ear and sending electrical signals directly to the hearing nerve. She learned to move through the world with limited vision. She became an expert at navigating Ohio’s disability resources. It wasn’t easy.
Michelle had believed her disease couldn’t be passed down from parent to child. Yet Daniel clearly had the same condition. Michelle grieved for the future she had imagined for her son, then reframed the situation. She knew exactly what kind of challenges her son would face. No matter what, she would be Daniel’s number one advocate.
Daniel received hearing aids, but Michelle knew that they wouldn’t be a long-term solution for his progressive hearing loss. Choosing cochlear implants would give Daniel a chance to learn how language sounded while his brain was developing. Daniel had grown up seeing cochlear implants on his mother and calling them Michelle’s “ears.” They weren’t unusual to him. The family went ahead with the procedure and two weeks later went to Christine Schafer, AuD, their Nationwide Children’s audiologist, to have the device activated and calibrated.
As Christine turned on his implant, Daniel played with a toddler toy. An electronic tone sounded, and Daniel turned around abruptly. “Beep,” he said, pointing to the source of the sound and then his right ear. He had heard the beep! His parents and Christine were ecstatic.
Since then, Daniel has been receiving speech therapy to help him interpret the sounds he is hearing. If he doesn’t understand what his parents say, they switch to American Sign Language (ASL). But he’s more interested in communication than ever before. He responds to his name, tries to repeat words and wants to listen to music. “Cochlear implants are a great tool in your child’s toolbox,” Michelle says. Daniel will likely receive another implant in his left ear. Nevertheless, Michelle sees Daniel as a member of both the hearing and Deaf communities. “He can choose. He can be a part of both worlds,” she says. “He belongs anywhere and everywhere.”
To support more kids like Daniel and their families, give to Light Up the Lawn, Light Up a Life.
