In 2016 our son Aaron was just a few days shy of his 4th birthday when he started complaining of headaches. A diagnosis of strep throat kept us home for a few more days until the pain got so bad we had to take him to the hospital. There they found a large cavernous angioma (or malformation as they sometimes call it). It was located in his cerebellum and had grown big enough to cut off the flow of brain/spinal fluid and cause hydrocephalus. After 8 hours of surgery, the doctors were able to remove it all! Since the cerebellum is the movement and balance center of the brain we were unsure of what the lasting effects would be. He is now a happy healthy 6 year old and enjoys playing baseball, bike riding and skateboarding! However he does have 2 more small angiomas in other locations of the brain that we will watch closely. We now know that genetically he has a hereditary gene mutation that causes cavernous angiomas. I have a small angioma as well, so me and our daughter are now in the process of genetic testing to see if we have the same mutation.
With that being said we are excited to raise money to support angioma research! Please help us fundraise and promote of awareness of CCM!