Connections, information gained from Family Conference
“Each Kleefstra Syndrome child and parent is different, but we all have so much in common that the rest of the world cannot really understand. Being together in-person with our collective KS family is so joyful and so educational.”
With those words, Margo Metzger of North Carolina summed up the collective sentiment of attendees at IDefine’s first in-person North American Kleefstra Syndrome Family Conference, “Living in Holland,” held June 23-25 in Naperville, Illinois. Metzger, co-director of IDefine communications, attended the conference with her 9-year-old daughter, Adelind.
The event, which welcomed 120 adults and 80 children (see Sib Shop article below), offered many families their first opportunity to meet other KS families in person.
Nicole Sagan and Frank Aguila of Michigan registered for the conference after their 1-year-old son, Dominic, was diagnosed with KS. “
“To actually meet and hug people going through the exact same thing was important,” said Sagan. “It’s easy to meet people over the internet in that sense, but to physically have a connection makes it more real and meaningful. I also got a new sense of not being alone in all of this, because you can see the other kids similar to our own.”