I’m Terry Montalvo and I have VHL. My family and I have this running through our genes. We have inherited this from my father who has passed away from this. My older two siblings have passed away from this disease as well. My younger sister and I have it. I am the only sibling who has passed it down to my two boys. I have undergone surgery in my left kidney and recently an ablation on my right kidney. I have grown many tumours elsewhere including brain, eyes, pancreas and spine. My younger sister has gone through many many brain, spinal, Kidneys and eyes surgeries. My oldest son (18) has gone through brain surgery this year and kidney surgery last year. My younger son (16) has grown tumours everywhere like us and has undergone eye surgery for several tumours. I have been an advocate to spread awareness to this disease; I have spoken with members of Congress to raise funds for the research and treatment of this disease. I pray in the near future we will have a cure for Von Hippel Lindau disease. VHL has taken loving people away from me I pray each day it will not take my children away from me. #vhlawareness
