A Very Special Bond
By Ally Doerrmann
Chase, born on May 18, 2011, was a beautiful baby boy and, in our eyes, perfect in every way. However, he failed his newborn hearing screening 24 hours after he was born. Chase then had a sedated hearing test that gave us the diagnosis - bilateral sensorineural hearing loss. We were devastated. My husband Dave and I, our family, and the audiologist all sat there and cried as we waited for Chase to wake up from sedation. The nurses and cochlear implant team circled around us and gave us so much support, assuring us he would be fine.
After receiving his cochlear implants on April 22, 2012, Auditory-Verbal Therapy, and speech therapy through Early Intervention helped him reach all of his speech milestones. After a child is implanted, the audiologist must then program the device. The parents then work with ths Auditory-Verbal therapist to teach a child how to hear with the implant, as well learn receptive and expressive language and develop cognitive skills. We worked our butts off and our little boy was unstoppable! He was fearless, social, kind, and fun.
When Chase was five-years-old, as we were leaving my job, I noticed his struggling to see to get to my car. I worried a little but brushed it off because it was very dark out. A few weeks went by. We went camping. I again noticed Chase having trouble in very dark areas. I googled, “My child is deaf and has trouble seeing at night.” Right away, Usher Syndrome came up. Becoming hysterical and nauseous, I immediately told my husband, “I think Chase has Usher Syndrome, which is why he is having trouble seeing at night.” My husband calmed me. We decided to take Chase for further genetic testing. Our cochlear implant team and doctors told us it was very unlikely Chase has Usher Syndrome, a very rare disease, because we have no history of deafness or Usher Syndrome in our family.
Our world on July 14, 2016, turned completely upside down. I saw the hospital calling on my cell phone. My stomach dropped, and I knew this was it. The genetic counselor told me that Chase’s results came back. He had Usher Syndrome Type 1F. After hanging up, I immediately texted my husband and my parents. I had never seen my husband so upset. I remember Dave saying, “What can they do for him? He needs his vision. How can this happen to him?”
Immediately reaching out for support, I found Rachel Root and Melissa Chaikof through Facebook and the Usher 1F Collaborative page. These women are nothing short of amazing. They gave me nothing but positive feedback. They knew exactly how I was feeling and still told me that we will stop at nothing for our children. And we will fight for a cure.
Finding out Chase’s diagnosis of Usher Syndrome led to the worst year of my life. How could this happen to my son? I would give anything to take on this disease for him.
I thank God for my husband and my supportive family. Some days it was hard to get out of bed, and I would cry myself to sleep. Holidays were just not the same because all I could think about was Chase eventually becoming blind. Like any other kid, he was always so excited for the holidays. I always had so much fun making them extra special. At Christmas time, he wouldn’t be able to see the tree. Would we have to stop our traditions of driving around looking at Christmas lights? No child deserves that.
One day, my husband said to me, “Look outside.” Chase was out there running around playing with his little sister, Avery. My husband added, “He is our son, and we are going to do everything and anything we can for him. You can’t keep letting this ruin your life. Let’s promise each other not to dwell on this and enjoy life one day at a time for our boy.”
Although I still worry about Chase’s future every single day of my life, I know that I am a mom, and these kids need me. Yes, there are going to be good days and bad days, but sitting here depressed is not going to help find a cure for Chase. We have continued to teach Chase to be an advocate for himself, to speak up if he needs something.
Chase is now 10-years-old. We could not be prouder of the kid he is. He is kind, athletic, independent, and a great friend. He is involved in soccer, baseball, football, hunting, fishing, and the local 4-H program. He is also an amazing big brother to Avery 7, Beau 2 ½, and our surprise twins Jax and Brady, 15 months. Jax was also born with Usher 1F.
When we told Chase Jax’s diagnosis, Chase said, “Don’t worry mom. I will take care of him and teach him everything he needs to know.” Jax and Chase have a very special bond.
Jax still has time for his vision loss to begin, but I do not want to sit back and wait for that to happen. Jax, who received his cochlear implants in February 2020, has been making amazing progress. As for Chase, he is almost fully night blind. He can no longer play the outfield position in baseball because he loses track of the ball when it is hit. At friends’ houses when it begins to get dark outside, Chase makes his way inside while the other kids continue to play outside games. Hearing and seeing this breaks my heart. I pray every day that Chase can continue participating in all of his hobbies. He talks about driving in the future and even saves his money so that one day he can buy a truck like his dad.
We need to continue working towards a cure/treatment for these children and adults. I do not want to see the day when I have to tell Chase he cannot play a sport or must stop an activity because of his vision. No one deserves to live in a world of darkness. We have so much hope and truly believe the research happening today is on the right track for a cure or treatment. We will continue to work towards it and will stop at nothing!!!!