Kelsea Collum - Usher Syndrome

Saturday, September 20th is Usher Syndrome Awareness Day. A day to bring awareness to a syndrome that most have never even heard of. Usher syndrome is rare, affecting only 3-6 people out of every 100,000 worldwide. Usher syndrome is the leading genetic cause of combined deafness and blindness. Currently, a treatment nor a cure exist. 
Before January 22nd, I was like many of you and had never heard of Usher syndrome. Our son, Cade, was born with bilateral moderate to moderate-severe sensorineural hearing loss. He was diagnosed at just one month old and without any family history of hearing loss, a medical workup was indicated. After a negative infectious disease workup, we turned to genetic testing. After a month-long wait for the results, we got the call. The call that altered the course of our lives forever. On January 22nd, 2025, Cade was diagnosed with Usher syndrome type 2A. The silver lining of Cade’s diagnosis is that his hearing loss shouldn’t worsen and should remain stable throughout his lifetime. But, by the time Cade reaches his 30s, he will likely be severely visually impaired or even, blind.

 

*if you are local to Eugene/Springfield/surrounding areas, we will have a couple local fundraisers. One is at Orange Theory Eugene at 10:45am on 9/20. The other is at Espresso 58 in Pleasant Hill on 9/20.