This is our 1st time to attend ASF’s event, and we have anticipated this trip for few months and it’s finally here. The kick-off for the Family Conference is exactly how I pictured it in my head. Lots of Angelman Syndrome families, some active AS kids are running {and you see their parents chasing them so they won’t trip, fall or hurt themselves), you’ll see some AS kids are smiling/laughing their excitement, parents are registering, some are mingling with other families while I am looking around, choking my feelings because this is the moment where I can really say … we are not alone in this journey. When you visit with other families, the rawness of our AS journey is quantified because we are seeing and hearing the same AS adventures from other families.
I visited with an Angel Mom who has a daughter that can read and write. We’ve talked about literacy/education in AS. Her daughter’s robust communication skill was and is inspiring. By the time we were done conversing, I am hopeful that if I continue the path I’m leading Matt, there is possibility he acquires literacy concept.
Throughout the day, there were several sessions outlined in the agenda. I’ve attended the (1) Update medical/therapeutic research (2) Just for Mom — women from different States are grouped together to talked about what are our struggles raising an AS kid, (3) Evening welcome to all families — which we dined with AS families, recognizing other AS partners who made an impact to the AS community. Overall, the event did not disappoint me.
