Hi Friends & Family,

As some of you may know, I was diagnosed with Late Onset Tay-Sachs disease last year. After attending the National Tay-Sachs & Allied Diseases (NTSAD) Annual Family Conference for the first time and meeting some amazing people, I want to start raising money for research for a cure and spreading awareness. I need your help, and I appreciate your support. Here is my story.

After college in November 2021, I noticed that I was having trouble climbing stairs. Since then, my leg muscles have continued to get weaker and weaker. Now, I can’t even wear high heels, but that’s not too much of a loss. Everyday tasks have grown more difficult whether dressing myself or getting up from a chair. Sometimes, I fall when I’m walking. My legs just give out.

I expected to be spending my 20’s a little bit differently, but I still live my life and adapt as much as I can. I spent some time in pursuit of an answer and finding out what was the matter with me. I saw a neurologist and underwent tests at the University of California San Diego (UCSD).

I was diagnosed with a rare disorder called Late Onset Tay-Sachs disease. My Mom and Dad are carriers and never suspected they each had the recessive geneOften referred to as the "unit of heredity." A gene is composed of a sequence of DNA required to produce a functional protein. More for this neurodegenerative disease. According to NTSAD, I am among fewer than 100 cases reported worldwide. Infants with Tay-Sachs usually die by age 4. Children with the juvenile onset pass away before or shortly after entering their teens. So, I guess I’m lucky that at my age, I am still alive. But the disease’s progression will continue. And I must ponder a future where swallowing may prove difficult; my mobility will be limited, and I will need a wheelchair. You can learn more about Tay-Sachs disease here.