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#SaveBennyAndJosh ♥ Happy Father's Day & FDA update



Gary, Benny, Josh & Evan at a recent upstate getaway


I've wanted to be a dad for as long as I can remember. I ended up waiting 42 years and what was supposed to be the most rewarding day of the calendar became something entirely different for me. Benny was born shortly after Father's Day 2016, making 2017 my first Father's Day. We didn't yet have the Canavan diagnosis, but we knew something was wrong. As emotionally difficult as that first Father's Day was, I never could have imagined how bad the news I'd receive 6 weeks later could be. Josh was born July, 2017, so by Father's Day 2018 I knew that BOTH of my sons were afflicted with a terrible disease, I (& the world) knew very little about. A day for Father's to celebrate was a day I wished didn't exist. By Father's Day 2019 I had gained some perspective. I won't pretend that everything was OK, but I had mostly dug myself out of the deep hole I was in & I was working on my spiritual faith ("emunah"). Did I wish Benny and Josh were walking at three and two years old respectively? Of course. Did I long to hear my boys call me "Poppa"? Yes, and I still do. I was in a better place emotionally, but the significance of the day sent me back into my dark place. Today is my fourth Father's Day as a dad. When thinking about Benny and Josh I still cry (a lot). I still struggle to accept the reality that my sons may never call me Poppa. The dream I had of playing ball with my boys is now replaced by visions of them (please g.d) learning to walk following their treatment. Emotionally, I'm not quite sure how I feel. I love Benny & Josh and I love being a dad, but I wish I was spending the afternoon with my boys all standing by my side. Instead, Benny and Josh are in their "special" chairs, and I have something to pray for by Father's Day 2021. They say life is not a sprint, it is a marathon. I've accepted that my marathon has hurdles. Massive hurdles. Brick wall hurdles. I've run straight into these brick walls so many times and it HURTS. With the help of my amazing wife and incredible support system I've gotten up each time & dusted myself off. I'm very bruised from it all - emotional injuries that I know will be with me for life. But I'm still running...I won't give up. This Father's Day was supposed to be filled with hope and happiness. In addition to a third son Evan, who is now walking around, saying "Poppa" (sort of) & showing the signs of being the baller I've always dreamed of, we expected to get good news from the FDA this past week. Our lead scientist submitted the paperwork to the FDA last month and we expected a positive response a few days ago, but instead the FDA informed us that there are still some issues that need clarification. So instead of scheduling the surgeries and making plans at Dayton Children's Hospital, we're praying and hoping this won't be yet another significant delay for the boys' treatments. Crash - another brick wall. We have an amazing team and with their help we'll run through this brick wall. It already hurts and it may hurt more, but we'll persevere as we've done for nearly 3 years. Last month, we had 30 days to raise $650k to pay the drug manufacturer. It was a seemingly insurmountable goal, but with your incredible & generous support we raised the money on time. We now need to raise the final $560k to cover hospitalization costs and with your help, support and generosity, we'll overcome our final hurdle. Please donate generously. My Father's day blessing to you, is that you have the strength to run through your brick walls and realize all your dreams. Happy Father's Day. -Gary

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