By Miriam Bernard
The Grantham family’s first NODCC conference was the 2022 conference in Frisco, Texas. Their son, Rhett, had been diagnosed with ACC and they felt the need to experience community with others going through the same. “We didn’t really know what to expect,” Zac shared, “but we were familiar with the area so we went down there and met up with a lot of families… It was so cool because you connect with all these families across the country and the world who are dealing with the same thing that you’re going through, and you immediately have this bond with them… It felt like we knew everybody immediately.”
Zac recalls how before the conference, he and his wife had never heard of certain DCC therapies such as equine therapy, and now their eight-year-old can ride a horse – all because of information they received at conference. It’s not just the information though. Zac shared how special it was getting to sit in on a Q&A panel with DCC young people. He stated, “When you have a young kid still in grade school that has this condition, then you talk to these young folks, it gives you hope. I looked on that stage to these young people and thought ‘You all are absolutely brave, and you are amazing.’ So this inspired my wife and I seeing what they’ve accomplished in their lives, and thinking of our eight year old. This encourages us with what he’ll be able to do when he gets older.”
Zac also explained about the unique and valuable exchange of information conference fosters. He recalls getting peppered with questions by a young couple who’d recently discovered their child had a DCC in-utero. They shared everything they could to help this family get their feet under them, because they’d lived everything that family was about to go through. Then, within the same weekend, the Granthams themselves would have a conversation with an older couple who were parents of an adult with DCC, and they’d receive information and encouragement they needed because that couple had lived through parts of the journey they hadn’t yet. This hierarchy of information dissemination is one of the most wonderful parts of conference, Zac feels.
When asked what he’d like to share with the larger NODCC community about conference, Zac smiles and says, “Knowing that there are other people fighting the fight with you is so encouraging. You’ve gotta get there. Do it one time. My wife and I aren’t crazy about getting on an airplane, but we’re gonna do it and have a great time in Chicago this summer… We have our church family, our family, our friends, and they understand to a certain degree, but then we have our NODCC family and they truly understand – because they’ve lived it.”
If you attend conference this June, keep an eye out for Zac, as he’ll be emceeing some of the events in Chicago! To sign up to be one of this year’s NODCC Conference attendees, click HERE!
