When Vincent was 6 months old, we discovered that he had a golf ball sized tumor in his bladder that, after surgery, was confirmed to be a plexiform neurofibroma. That was 2010, and our NF1 journey has now led us to a clinical trial. After that surgery in 2010, we discovered that Vincent had a tumor on his sciatic nerve, as well as the one in his bladder and throughout his pelvic region. He was stable for a couple of years, but the tumors started growing when he was 2. We monitored them and then started a clinical trial drug in 2013. He stopped taking that after a 2-year protocol, and, unfortunately, they started growing again. So, after a few starts and stops, he was finally accepted into a very promising clinical trial and started taking new medicine in September of 2016. The NF1 community is very hopeful, and it’s thanks in part to the amazing fundraising done by Cupid’s Undie Run for The Children’s Tumor Foundation! Thank you from the bottom of our hearts!
Vincent A Timko
When Vincent was 6 months old, we discovered that he had a golf ball sized tumor in his bladder that, after surgery, was confirmed to be a plexiform neurofibroma. That [...]