In 2012 my son had a grand mal seizure that came out of the blue. Several tests were done and there was no diagnosis. He was placed on anti-seizure medication for over a year. 14 months after his first seizure he had a severe headache, sinus infection and numbness in his hands and feet. He went to an ER where he was diagnosed with a complex migraine and sent home. A few days later, he had another grand mal seizure. He was taken to another hospital where it was determined he had a stroke which affected his right side and speech. An MRI showed a mass in his brain. Several other tests were done, including a spinal tap and a brain biopsy. He was diagnosed with Central Nervous System Vasculitis (CNSV). He did not survive. With an earlier diagnosis, we likely would have had a different outcome.
Several months after Brett’s death, I met with Brett’s rheumatologist, who was brought into Brett’s case after his diagnosis. I needed to have a better understanding CNSV and what happened to my son. He spent a generous amount of time with me. At that time, Brett’s doctor encouraged me to consider volunteer work with vasculitis (when I was ready).
Three years later I attended a national symposium for vasculitis patients, family members and care givers. I was so pleased to see how many people were living with vasculitis and how much hope they had for the future. When I returned home, I expressed that I wanted to get started with a fundraiser. Several people jumped on board and soon Brett Hack Vasculitis Charities was born.
Terry Hack