We just spent several days in Westminster, Colorado for the latest conference. For the first time, Ring14 USA joined together with two other organizations, Dup15q Alliance and Project 8p, and my opinion is that it was a major success! We quickly realized that Ring14, Dup15q, and 8p have many similarities and that our lives look very much alike, although our children may not share the same diagnosis. We were able to meet many new families and also spend time with other Ring14 families that we have come to know and love.
It struck me while there that fourteen years ago when Matias was diagnosed, I would have never imagined in my wildest dreams that we would be surrounded by such a strong community: other families – including some amazing parents and caregiver advocates, scientists, doctors, neurologists and neuro-psychiatrists, technology experts….
I mean, just people everywhere who love and want to help these amazing kids who face such big hurdles.
This year’s conference was packed with speakers in subjects like development, sleep, technology, epilepsy, genetics, research, peer support, and many more. Our children were even able to participate in patient-led research. It was great to be able to pool our resources and knowledge together with two other great organizations who are striving for similar goals.
When Matias was diagnosed all of those years ago, we were told that his doctors would learn more from him than we would from them. And while that does still remain true, it isn’t just his doctors learning from him anymore… there are whole teams of brilliant minds collaborating to find ways to improve the quality of life for kids born with Ring14 and other similar disorders.
When spending time with other families who are living such parallel lives to ours, even though we are scattered many miles away from one another, our world suddenly seems bigger. I really can’t stress the importance of having a support system when you have a child with extra needs. When we spend so much time feeling isolated, these conferences remind us that we are seen and we are not alone.
And when we do feel alone, we can remember that somewhere out there, under this great big sky, the very same sun rises and sets on an entire community that is in this fight together.
