The Dempster Family Foundation is thankful to the 22q support groups all over the world for their inspiration and courage!

The North Carolina 22q Support Group held a picnic for teens and young adults with 22q on Oct. 6th in Wilkesboro, NC. The picinic was hosted by JD Mayo, a young adult living with 22q, and his parents John and Mary Mayo.

Read Mary Mayo’s account of the picinic below.

The group met at the our farm in Wilkes County, NC and had an hour of easy social interaction, wearing name tags, followed by a lunch together as families, with the young adult Guests of Honor sitting at their own table. The party was structured to give he Guests of Honor as much autonomy as possible. They stayed down in the basement for most of the party, with a single family member going downstairs to be the activity leader throughout the afternoon. It was a beautiful day and there was lots of informal strolling up and down the stairs and in and outside. These young adults were extremely nervous in the days leading up to the party, and at the beginning of the party. But, after an hour or so, they all softened and there were increasing smiles and laughter as the day went on. It took a lot of active encouragement from the family activity leader to get them to participate, but there was a little more self confidence with each activity.

JD (our son) thought the discussion group format was the least effective. He told me that some of these people “…just aren’t going to be able to share.” He would have liked more games. The important thing was just that they were together. The only formal instructional activity was an introduction to yoga. The instructor was well prepared for their various difficulties, so she did chair yoga and focused mainly on breathing techniques and relaxation. It was a 25 minute session. Other activities: a music jam, an art sharing discussion, and an xbox tournament. We planned 2 or 3 other sharing sessions that we just couldn’t get to, time-wise. The guys loved the xbox, but the girls went outside to play with the younger kids during that part! The grand finale was a 45 minute hayride, complete with a Pied Piper. The Guests of Honor were delighted to find out that cows will eat brownies!

As for the parents and caregivers, there was an easiness of being together. Lots of contact info was exchanged. There were many valuable conversations about medication experience, successful Doctor relationships, and simply sharing our concerns about the difficulties of coming to age with 22Q. We are experiencing more emotional and psychological issues at this age. But, the single biggest issue is a loneliness in the young adutls dealing with this condition in their home towns. It was invaluable for the caregivers just to be able to tell their stories. One of the comments was, “It’s so hard to tell if the issue is the syndrome, or if it is just a psychological problem.” There was much frustration about the lack of knowledge in the wider medical community about this syndrome, but we were all also aware of our unique space in medical history. We seem to have the first generation of young adults who have survived serious medical issues and are now coming of age in the era of 22Q diagnosis. it is incredibly moving to see how much the families of these child-adults are willing to sacrifice in order to help their children reach their fullest potential. I am so grateful that we were able to get these lovely young adults together. Our son was saying on the morning after that is was so good to make new friends who know exactly what you are going through.