My Story
In moments my entire world had changed. During my 20-week prenatal visit, my OBGYN admitted me to the hospital and sent me in for a Brain MRI because my symptoms were way past normal pregnancy symptoms. After the MRIs and a bunch of tests were completed, I was informed I had a large tumor on my brainstem, with cysts all down my spinal cord, in my kidneys and pancreas. They diagnosed me with a rare genetic disease called Von Hippel-Lindau disease (VHL).