We received the most devastating news of our lives. Our sweet little boy has Sandhoff disease and has rapidly declined. Will was attentive, caring, and kind. He bonded with my husband and was attentive not only to our son, who is suffering from seizures, but also to the family in the room as well. He kept his spirits high and allowed us a break from grieving and brought normalcy into our space. He met us where we were mentally. He also never skipped a beat when I was worried about something. I’m not sure if it’s where he always sits, but he was almost always right next to our room and was monitoring my son as I was.

These events are new to us and terrifying. He came in with a calm demeanor while still having a sense of urgency. He did not make me feel bad for the worries I had and would pass them along to the team. That has not been the universal experience we have had, and it was very appreciated. The duration of time we have spent here is lengthy. The days are hard. We are so thankful our little guy is getting help and are joyous that we get this time with him, but it has been a challenge in ways. Keeping our son comfortable is the biggest priority in our lives, and to feel like someone else wanted to help us find a path to that was super helpful to us. I will never not advocate for my son, but not having to fight every step of the way to ensure he is advocated for means a lot to us.