When Matias was diagnosed with Chromosome Ring14 at one year old, we were told that there were only about thirty people in the whole world that shared his diagnosis. I remember feeling completely defeated over his doctors having very little knowledge of this rare chromosome disorder, and alone with no one to turn to – no one who shared our experience.
In 2011, when Matias was five, I searched “Chromosome Ring 14” on Facebook and was shocked and thrilled to find there was a group for people diagnosed with Ring14 and their families. I immediately joined. At that time, the group was still very small although the number of Ring14 diagnosis’ was growing. Still, I felt like I had found our family. And truly, I had.
I was introduced to the Ring14 International non-profit, witnessed Ring14 USA come about, and eventually began serving on the board. While the benefits of having a non-profit for Ring14 are endless, one of my favorites is that starting in 2013, we began organizing family meetings in the USA for Ring14 families. We attended our first family gathering in 2013. In 2016, we expanded the format to include an education component making this our First Ring14 USA Family Conference and our most recent family conference was in 2018. Our next conference is coming up in 2021, and I absolutely can not wait!
Let me tell you why.
These conferences have been life changing for our family. We get to meet and hear from doctors, researchers, and experts that are dedicating their time, effort, and knowledge to Ring14 research. We get to ask questions and share our knowledge with them, as well. We often leave with important information to share with our child’s care team. Because we are so used to meeting doctors who haven’t even heard of Ring14, I always leave these conferences feeling full of hope in knowing that there are brilliant minds at work for our loved ones and those diagnosed in the future.
I still have to admit, my favorite part is getting to spend time with the other families. During the conference weekend, the schedule includes time for the families to mingle. I never feel a stronger sense of community than when I am with others who truly understand. Walking in our shoes, that is a rare feeling – to be understood, to share similar experiences, to be able to take and give advice.
To top it all off, conference weekends are always a blast for the whole family. We met other Ring14 families for the first time in 2013 at The Center For Courageous Kids in Scottsville, Kentucky. That weekend there was fishing, horseback riding, dancing, Trick-Or-Treating, and more. We shared the weekend camp with a group of Dravet families from the Epilepsy Foundation. In 2016, we went to Morgan’s Wonderland in San Antonio, TX. Morgan’s Wonderland is an accessible theme park. It was the first time that Matias could do everything his siblings could do, including ride every ride. Our last conference was in Orlando, FL, when the conference was held at Caribe Royale Resort. We spent time in the resort’s super awesome pool with other families, visited Disney Springs, and shared a wonderful farewell dinner together. This year, Ring14 USA is collaborating with Dup15q Alliance and Project 8p for a Colorado conference in July! All the families from these three associations share a very similar life experience. We believe that we can provide richer content together while still maintaining community within each association. For more information, see our conference page.
We will continue to attend Ring14 conferences as often as we can, because Matias gets the experience of knowing other people who share his journey. The connections that he has formed during these weekends have been priceless. My other children have gotten this wonderful experience of growing up alongside other siblings that can relate to them in many ways that most children cannot. They form bonds and relationships with each other. As parents, we get that sense of understanding and community that I mentioned earlier, along with valuable knowledge that we can share with others.
Each Ring14 USA conference we have attended has been a unique experience that will last a lifetime. We are truly grateful for all of the donations, research, time, organization, and effort that make these conferences happen. I look forward to sharing more details about the upcoming conference as they become available!