Friday Kick-off (7/29/2022)

Emily & Richard Gerst, parents of Cecilia (8)

July 28-30, 2022, Children’s Hospital of Philadelphia hosted the 3rd biennial Skraban-Deardorff Syndrome Family Meeting. On July 28-29, families were given the opportunity to schedule in-person clinic appointments with Drs. Skraban and Deardorff and the research team. In the days leading up to the family meeting weekend, families began settling into the City of Philadelphia, and our tight-knit Facebook community started to buzz with excitement. Our feeds were filled with photos of (perhaps surprisingly!) well-behaved little travelers and families savoring the plentiful sights that Philadelphia has to offer. On Friday July 29, families received an unexpected impromptu email invitation to gather at CHOP’s Buerger Center Treetop Terrace rooftop garden before the scheduled welcome dinner–We simply could not wait to come together any longer!

For many families, like ours, this was our first experience meeting others from our SKDEAS community in person. As each family stepped into the lush Treetop Terrace green space, warm welcomes were shared by a sea of familiar faces. Around twenty families attended the weekend’s events, bringing our total group to about a hundred people. The children were seen giving hugs and holding hands as they quickly took a liking to one another. Being surrounded by other families affected by Skraban-Deardorff Syndrome, the meet and greet immediately felt comfortable, much like a family reunion.

Families enjoyed the freedom to allow their children to truly be themselves, without the apologies or explanations we oftentimes find ourselves providing in other typical social settings. Seeing the kids together in one place, the physical characteristics many of them share shined through, creating a notable sense of familiarity among the group. A few comments were exchanged that some of the children look as though they could be siblings! The children simply mingled and laughed; and some even splashed around in the sizable outdoor water feature, meant to represent the Schuylkill River’s position in the City of Philadelphia. The children truly seemed to understand one another, regardless of the communication challenges present within our population. Joy seemed to quickly spread among every person in the garden space.

Our time in the garden whizzed right by, the way that time always seems to move quickly when you are truly enjoying yourself. Around 6:30 pm, families entered the Buerger Center’s indoor conference space for a welcome dinner. Pizza and salad were brought in by our extremely generous and hardworking research team, after already serving our families with a full day of clinic appointments. It felt incredibly fitting to sit down with our new SKDEAS family to share a big family meal together. The atmosphere remained easygoing as families gratefully bonded over our shared experiences, the same experiences that can make us feel somewhat isolated back in our local communities. Dr. Skraban, Dr. Deardorff, and Katie Grand floated around from table to table, embracing these casual moments to connect with us and observe the kids in a more relaxed setting.

Though conversation continued to naturally flow, time was beyond our control and the evening began to wind down. Slowly, people filtered out of the conference space to get their families all rested up for the highly anticipated jam-packed day of scientific/clinical presentations and parent discussion panels, knowing we would also be joined by additional SKDEAS families from all over the world by virtual means. We wished each other goodnight and headed back to our beds for the night, eager to see what the next day would bring.