The purpose of the Cliona F. Cady Endowed Fund is to provide ongoing unrestricted funding for the Smith-Lemli-Opitz Foundation.
In March of 2024, we were in our local Trader Joe’s with our daughters Zoey, Keegan, and Cliona- we were surrounded by so many friends as both my husband Tanner and I worked there at the time. Clio had just broken out of the NICU the night before, and so there were many people excitedly surrounding us to finally see and meet our miracle baby.
It made for a pretty wild time to take a call from ‘the geneticist’ who quickly became ‘her geneticist’ as she was informing me of Cliona’s positive diagnosis for Smith-Lemli-Opitz syndrome. We hung up, paid for our groceries, and went out to the car, where I googled the diagnosis. Thankfully, I came across the foundation website first. I immediately signed up as a family recently diagnosed, as well as taking in as much information as possible in the 15-minute drive home.
When we arrived home, the weight of the phone call and the weird feeling of integrating a whole new human into the family was felt, so we packed the kids up for our first family walk.
While on this walk, enjoying the pockets of sunshine that greeted us, we received another phone call. I was expecting many from the hospital and the multitude of services we were signed up for after leaving the NICU. But to my surprise, the phone call wasn’t from the hospital.
“Hi, Kim? This is Gretchen. I’m calling from the Smith-Lemli-Opitz Foundation and wanted to call to welcome you all to the family.”
I don’t remember much of the phone call after that simply because the relief of hearing from someone in the same position as us overtook me. When I hung up and told my husband, whom I had been talking to, we both had tears.
Receiving a rare diagnosis for your child is an awfully lonely thing to go through. It makes others feel awkward when you talk about it; you’re often the expert on the condition at your child’s appointments, and every day is both a gift and a mystery as you don’t really know what’s to come. But, what we did know for sure was the overwhelming support, the resources, and the access we had through the foundation. This fact made it so easy for us to hold a fundraiser for Cliona’s first birthday.
Since Clio arrived home, Tanner has changed locations, and I have transitioned to staying home full-time. Having the fundraiser gave all the people I mentioned at the beginning of this tale the opportunity to support our girl and MAN! Were they happy to do so!
We reached out to our friends at Dry Fly Distilling here in Spokane, Washington, to see if they would want to host the event. They quickly took on the project and provided more than we could imagine. They suggested that we create a custom gin and label that we could sell with profits going to the foundation. We took the girls in and got to choose all of the aromatic add-ins and our 5-year-old Zoey got to work helping design the label.
The day of the event came, and we were flabbergasted— Dry Fly donated a door prize, their kitchen made amazing snacks, they put out donation buckets, and approved donating a portion of purchased drinks to the foundation.
I knew we had an amazing community: family, friends, coworkers, former coworkers, coworkers of family members, and beyond… The word spread and we quickly sold out of gin, the donation buckets were overflowing, and we were taking names for later pick ups of the next batch of bottles.
Can you believe it? I’m still reeling.
All of this comes to an incredible conclusion… Celebrating our Cliona and joining the Smith-Lemli-Opitz Foundation was one of the best things we have ever done. It has brought us so much joy. It also inspired us to establish the Cliona F. Cady Endowed Fund for Smith-Lemli-Opitz Syndrome at the foundation in honor of Cliona. We are so thrilled to continue adding to it year after year.
Happy first birthday, Cliona! We are so grateful to have such a force of a girl like you in our lives.
Sincerely,
Kim and Tanner Cady
Parents of Cliona Cady
