Adley's Story

Adley is our beautiful, curious and life loving girl who is navigating the world with unilateral auditory neuropathy. This condition is rare and affects the way sound signals are transmitted from the inner ear to the brain. 

Adley's journey began shortly after birth. Standard newborn hearing screenings revealed an atypical response in her right ear, prompting further testing. We were told upon discharge from the hospital that it was most likely due to residual fluid and to follow up with audiology. After re-screening, multiple auditory brainstem response (ABR) tests and an MRI, a diagnosis was confirmed.

Understanding the diagnosis was the first step. We gave ourselves time to grieve the life we imagined and began the journey into our new unknown world. Although joining the Deaf and Hard of Hearing community seemed intimidating at the time, it has truly become one of the best experiences for our family. The families and people we have met along the way have become more than just a support system; they are truly an extension of our family. We celebrate every milestone, no matter the size. To someone who is just beginning this crazy wonderful journey; I recommend you find your people. This journey can feel isolating at times and having families who are also walking the same journey as you is so important. 

Living with unilateral auditory neuropathy means Adley experiences the world with one "good" ear and one ear that receives distorted information. This can impact various aspects of her daily life. Adley often struggles to pinpoint the direction from which a sound is coming. Understanding speech in noisy environments is another significant hurdle. Despite the challenges her diagnosis throws her way, she continues to make great strides.

While Adley's overall language and speech development has been remarkable, there were early concerns about how her unilateral auditory neuropathy had shown impact in these areas. Close monitoring and early intervention, including speech therapy, have been crucial in ensuring she continues to develop strong communication skills. Adley is very much a visual learner and uses American Sign Language (ASL) to support communication. Although she is verbally more expressive, we as a family use ASL to help fill in the gaps of any information that has been missed, or when clarification is needed. Adley's journey has been wonderfully supported by an amazing team of dedicated professionals with early intervention. They were able to open our eyes and hearts to the beautiful life that is being lived in our little girl. 

Adley is learning to navigate her world with a unique auditory perspective, and her joyful spirit, determination and adaptability shine through. Her story is a reminder of the importance of early diagnosis, support, and a belief in every child's potential to thrive.