Thank You, Danny!

Earlier this month, our week started off with some great news. One Monday morning I missed a call from a number I didn’t recognize. When I listened to the voicemail I was thrilled to hear the message from the Danny Did Foundation. Evan was home to entertain the boys (since we all know phone conversations with children present are nearly impossible) so I stepped outside and called them back right away. The kind gentleman I spoke with asked me all about Gage, what his seizures have been like lately, if we’d reviewed the different options for alert systems and more. He explained their mission is to make sure families have found a good fit for what will work best in their lifestyle. After several minutes of discussion, he told me that we would be granted the funds to cover the cost of a camera monitoring system. I was overjoyed. He explained to me how the process worked and after I hung up the phone, I hurried to tell Evan the happy news!

Later that same day, we were able to order the device, a SAMi video monitor. It detects movement during sleep and activates an alarm in our room if the movement lasts longer than a specified amount of time. In less than a week, the camera had arrived on our doorstep. We spent Sunday night getting it set up and then fine tuning the different options and settings to see what we thought would work best. I think that fine tuning will be an ongoing process. But for the last week, Gage has slept in his own bed at night. That may seem like a small feat, but it’s a big deal for us. Having a way to monitor him while he’s in a different room has given us a least some peace of mind.

A few weeks ago I wrote that trying to find a solution for Gage’s seizures at night felt like grasping straws. There are so many unknowns in our world and so many things outside of our control. But I will always been incredibly grateful for any and all help that we get along the way, whether it’s another mom offering helpful advice or organizations like the Danny Did Foundation helping families like ours. The Foundation began to honor the memory of a young boy, Danny, who passed away from SUDEP (sudden unexpected death in epilepsy) just before his 5^th birthday. It was Danny’s uncle I spoke with on the phone that morning, and he expressed a sense of gratitude that his nephew’s legacy is able to live on, even if it’s not the way their family would have liked. I told him that I would never be able to fully express my gratitude, over the phone or otherwise. But from all of our family to all of his, we want to say, “Thank You, Danny.”