personal fundraiser
Norik Paul Taylor Heithoff
Meet Norik
His name means “King of the North,” and from the moment he arrived, he’s lived up to that title. Norik is a sweet baby with an infectious laugh, and one glance into his vivid blue eyes will leave you wrapped around his finger.
We knew life with Norik would be an adventure from the very beginning. On the day he was born, a severe thunderstorm rolled in. I went into labor to the sound of hail pounding the hospital windows and thunderclaps shaking the bed. Tornado sirens went off not long after giving birth, and we were rushed into the hallway for safety. I couldn’t stand and had to be propped up, but even in the chaos, the moment I saw my son, everything else faded. After two miscarriages, a difficult pregnancy, and the constant fear of losing him, he was finally here. Our little miracle.
When the doctors told us Norik was profoundly deaf, we were stunned. But that moment quickly turned into determination. We dove headfirst into learning how to support him. We found a deaf mentor, enrolled in ASL classes at our local school for the deaf, and got connected with the intervention team through the Department of Education to start IFSPs (Individualized Family Service Plans). We also researched cochlear implants and weighed their benefits while always asking: What’s best for Norik? But then we were hit with another devastating blow. The genetic test results came back and gave us a diagnosis of Usher Syndrome type 1D. Usher Syndrome (Type 1) is a rare genetic condition where the child is born with severe to profound hearing loss, balance issues, and retinitis pigmentosa starting in childhood. So not only would our son face the challenges of being deaf, but he would also gradually lose his eyesight as well.
I remember sitting in the doctor’s office—my husband holding 3-month-old Norik—as the ENT and genetic counselor explained the diagnosis to us. Their demeanor was somber as they started the conversation with, “There are no treatments available for Usher Syndrome.” We would have to watch as our son went blind, and we were heartbroken. I stared into my son’s beautiful blue eyes. This perfect little baby who fought to stay alive during a difficult pregnancy—who fought so hard to come into this world—did not deserve this fate. What he needed now was for us to take up the fight. We would fight to save his sight.
I started reaching out to every foundation and organization that could help us, and what I found was hope. Advances in gene therapy and CRISPR technology were making headlines, with many new therapies being developed each year. These medical breakthroughs have the potential to stop and even reverse some of the damage caused by genetic conditions such as Usher Syndrome. But these programs need funding.
That is why my family is working with the Usher Syndrome Society to raise funds for a treatment for Usher Syndrome. Every donation to the Usher Syndrome Society helps fund the research, advocacy, and innovation needed to give children like Norik a brighter future—one where they can see, hear, and experience all the beauty life has to offer. Please help us in the fight for Norik’s sight. Your support gives hope—not to just our family, but to every family affected by Usher Syndrome.
