a taste of the sour…..

You just walked out of the doctor office doors, you have questions swirling around in your head and you are still asking yourself if what your doctor said was ‘right’? You can’t possibly have a rare disease….can you? Maybe it’s endless worry for the future holds now, maybe a loved one has gotten diagnosed and you want answers, or maybe you’re just curious about what a rare disease entails. I've been all three of those people.

The moment I got diagnosed I wish I had someone to turn to, someone that could tell me about doctor appointments, different tests and procedures, and ultimately tell me what my future was going to look like with a rare disease at hand. That was seven years ago and now I’ve lived it. I’ve gone through the good, the bad, the sobbing in my bed, the days of fresh air, and the sour. I’ve lived it, sometimes it was more of a crawled through it, but nonetheless I got answers to my questions. Maybe it wasn’t the way I wanted, but do we get anything really the way we want it?

I don’t want anyone to feel like how I felt when first getting diagnosed. I don’t want anyone to feel confused, lonely, or lost. I decided to do something about it. Coming out February 28th 2026, Rare Disease Day your personal tour into the rare! My new book When Life Hands You Lemons, Check for a Genetic Mutation is for the newly diagnosed, the misunderstood, the person who needs very specific answers to VERY specific questions. Overall it’s to raise awareness about this disease because out of the hundreds of things I’ve learned it’s to advocate. advocate. advocate.

There is so much more to come and I’m so excited for it. Soon, you guys will meet my second family and I can’t wait! I can’t spill much right now but……….

See ya’ll on February 28th!