The Sunday after the Angel’s game we headed back down to San Diego and checked in at our hotel for the conference. We stayed at the same hotel the conference was held in which was super convenient for Ryan’s naps during the week. We quickly headed back out to watch my brother play with a band at a nearby gig and get some dinner before crashing after a long week.
The conference started bright and early on Monday morning. The schedule for the week was jam-packed full of sessions from everything about various health issues, break-outs led by family members of 11q kids, and panel discussions to share results from current research to advocacy, IEPS, and legal issues. We were able to pick and choose what sessions applied to our family and Katie and I took turns attending. Child-care was provided and when both girls were there, we were able to go to sessions together. I can’t express how great the sessions were. The speakers were very informative and provided us with opportunities to ask questions. They even live-streamed most of the sessions so the 11q families that couldn’t make it were able to ask questions live online. So cool! That first day, each family made a poster about their 11q child and they were displayed all week. We also had a really nice opening-night dinner where all the families were introduced.
The best part about the conference was the opportunity to meet other 11q families. As soon as Ryan was diagnosed with an 11q deletion, I joined some support groups on Facebook. The first was for Jacobsen Syndrome because we thought she had that. I also joined the 11q Resource and Research Group and Unique. Unlike Down Syndrome, where there is a large community of support and many individuals with Down Syndrome all over the world, 11q deletions are very rare. These groups on Facebook became our support system. The families, from all over the world, were the experts. Ryan’s doctors, although very good, were not. If we ever had a question about Ryan, I knew that if I posted it, I would get answers within minutes. Since Ryan does not have Jacobsen Syndrome, I especially connected with a few families with kids that have an interstitial deletion like Ryan. One of those families is from Texas and they have a son who is just 1 month younger than Ryan. Tyler’s mom and I started messaging each other on a consistent basis and talked about everything from health issues to how we were feeling. It was so nice to have someone who knew exactly what we were feeling. So… over 2 years later we finally met! It was like we already knew each other… oh wait, we did! And our little ones played together well too!!
One night we had an adult reception. We had a few cocktails and got to know the other families. Talk always came back to the kids though – it’s what bonds us together as one big 11q family. This year there were not only families from all over the states, but also 2 families from England, 1 from Norway, and the family that traveled the farthest was from India!
During the week we had time for a little R & R too. When we weren’t at sessions, hanging out in the room, or chasing Ryan around the hotel, we had a few meals out and Charlie got to spend more time with Chloe and Uncle Dave! The conference is every 2 years and because our trip was such a success, I can see us going back again real soon! Special thanks to Dr. Paul and Linzee for making it such a special and educational week!