CDG-PIGN Around the World

One of the reasons we started our blog was to put something positive, yet realistic, into the world when we could only find a few depressing clinical research papers on Teddy's diagnosis. We wanted others who searched for MCAHSS1, CDG or PIGN to find something that provides hope and an opportunity to connect. We knew how much it meant to us when we connected with the first family with Teddy's diagnosis a month after we first learned the news. That e-mail allowed us to find the Facebook group, which has become our community. Instant friendships were made there, bound by a common disorder that is anything but common.

That Facebook group started so small, with only a handful of children who I knew all by name. In the past few years, we went from adding 1 child a year at most to several in a month at times. Candidly, it's gotten hard to keep track of all the children and families in our group, but we now have more people who share their experiences and help one another.

When a family from London reached out after finding this blog, they wanted to do a phone call. Rather than figure out international calling, we simply did a zoom call. And the lightbulb clicked. We could do a zoom meeting with our CDG group to connect families from around the world via technology. There was immediate interest from the group, so less than a week later we hosted our inaugural CDG-PIGN virtual gathering. 

Oh my goodness! It was absolutely incredible to see and hear these other families from around the world. We got to see a few of the children who are affected, and I couldn't not act like a giddy schoolkid waving at each of them. There are few instances where others nod in agreement when we share stories about Teddy, not just understanding but actual real-life experience that was the same. 

Oh, you know, some of my closest friends from around the world. 

We had families from Poland, Australia, Germany, the Netherlands and several from the United States, including families that moved here from Poland and the UK. It was a bit of a challenge to find the right time to do an international gathering, but we settled on 2 p.m. our time. Our Australian friends joined us at 6 a.m. and our European friends ended the call with us at 10:30 p.m. (Yes, we chatted nearly 1.5 hours!). The conversation flowed in English remarkably well, interrupted by a spontaneous breakout in Polish. That breakout simply made us all smile because it was so neat to see the connection, to be heard and understood by someone who simply gets it ... in their native language. 

We plan to schedule another zoom meeting next month and will likely continue monthly as long as there is interest. This gives us an opportunity to share what works for us, to problem solve, to ask questions and to learn from one another as we truly are the best experts on our children and their diagnosis. It allows us to leverage specialists from around the world on how to best help our children thrive. But, equally important if not more important, is the ability to connect with others who inherently get it. Trust me, we have amazing family and friends who provide an incredible support network for us. And those who interact with Teddy regularly understand so much of our life, but there's nothing quite like talking to other families who are walking this same extremely rare genetic journey.