In 2006, my daughter, Katie was diagnosed with a rare brain disorder,Vein of Galen Malformation, affecting only 1 in 3 million per year. After an exhaustive search for treatment, we were led to Dr. Berenstein at St. Luke’s Roosevelt Hospital in New York City. He is a brilliant pioneer in the field of neuroradiology and embolization treatment. After three delicate brain surgeries, Katie is considered cured and her future prognosis looks good. We are forever grateful to Dr. Berenstein and the parents we met online who encouraged and guided us through some very rough years. Now, we want to pay it forward.
I created the alliance in response to the road blocks I continually faced while initially researching information about my daughter’s condition. After diagnosis, parents need one place they can turn to for information. They also need someone to hold their hand, let them vent and answer questions. I hope I’ve provided a place to do all those things.
“To whom much is given, much is expected.” Luke 12:48