I took a trip to Trader Joe’s in Culver City last year, masked up and full of sanitizer. It was a trip I made every 2 or so weeks. That day, I was wearing one of our CDG shirts.
While I was waiting in the checkout line, the woman who was directing “traffic” asked me what CDG stood for. I answered her. “Congenital Disorders of Glycosylation… it’s the type of mutation my son had. The one he passed away from earlier this year.” I very unexpectedly got choked up and tears immediately came to my eyes. I’d gotten used to avoiding people – especially strangers – during the pandemic. She said her condolences, and waved me over to the cash register that was about to open up. As I stood waiting for the cashier to scan my items, she walked back over to me. “What was his name?”
“His name was Emmett. He was three years old.”
It was a small interaction but stuck in my mind. On the way home, I listened to Finneas’ “What They’ll Say About Us.” It was a song that always reminded me of Emmett, though it was inspired by BLM and Nick Cordero, an actor/singer who passed away from Covid last year. I heard the song through Amanda Kloots’ Instagram page; Amanda was Nick’s wife and their son wasn’t even one when Nick was hospitalized. It was a devastating story.
But, ever since I heard it, it reminded me of Emmett. And on this day, I just wanted to sit and think about him. As I listened to the song, I formed the words and envisioned the pictures that’s now put together as a video on our new fundraising page. 90% of the words from that video are ones I wrote that very day… hoping there’s a better future for other kids like Emmett someday. How much he suffered, how little of life he experienced… that will always break my heart into a thousand pieces. But I wanted to turn that sorrow into hope.
Sometimes my grieving looks like avoidance. And I avoided putting together the video for months – in part because I wasn’t sure what we’d do with it. As Emmett’s birthday neared, I looked at the words again and started learning Adobe Premiere so I could put the video together. I reached out to the other PIGA-CDG families, and an overwhelming amount responded with pictures to include. That video turned into this fundraising campaign that we’ve put together to raise the money we’ll need for the next phase in our gene therapy program. I hope you’ll take a look at it.
And as we thought about how best to honor Emmett on this milestone birthday, Steve and I also decided we wanted to do something that would have a direct and immediate impact, so chose to fund a grant program for something that we knew was so critical to the lives of all children with disabilities. And so the idea of Emmett’s Legacy Fund was created.
We’re going to visit Emmett today. And it makes me so happy that when we do, we can tell him about what we’re doing to help his PIGA and CDG family in his name and memory.
Happy 5th birthday, bubba. We’ll never stop loving you.