The KCNQ2 community is growing rapidly due to better awareness by doctors, parents, and our international foundation. We know that getting answers is crucial for parents, and meeting others with the same diagnosis can be life-changing. After many months and sometimes years of uncertainty we all feel comforted in the knowledge that we are not alone in this struggle.
As a family and an active member of the KCNQ2 Cure community we seek out people wherever we go. It has become an effort of mine to connect with families when we can – maybe it’s a way for me to cope and connect with our new situation, but really I think it is best explained with the german saying off “gleich und gleich gesellt sich gern”. (It just feels right!)
So when we visited Germany over the holidays we were able to connect and meet 2 wonderful new families, who were eager to catch up and share their journey. All three families came from 3 different corners of the country and arranged to meet in the (topographical) center of Germany, which was the beautiful city of Fulda. We were all able to stay in the same hotel for one night and spend valuable time together, sharing stories, knowledge and also fears with each other. There is so much to talk about!
The thing I enjoy most about meeting other KCNQ2 families is the perseverance I see in the parents and the love I see for the little KCNQ2 warriors. It is the confirmation that we all need, which is that life doesn’t stop. Family life goes on and although we all need to adapt and put our original expectations to rest, we can see an alternative path that is just as beautiful, even though it may be more challenging and somewhat unknown.
As an “export german”, currently living in California, I am not that close to my homeland anymore. For that reason it was extra special for me to be able to meet in Fulda, getting to know these families. My hope is that the german based KCNQ2 community will grow stronger, tighter, and that they will help educate and advance the knowledge of KCNQ2 there. It seems to me like things are changing in Germany and that awareness there also is expanding and with that, new families will be found and will be given an answer.
It was a wonderful experience meeting Sepp and Anna and their amazing and strong parents and siblings. Thank you for the great time! It helps us stay positive!
KCNQ2 mom and
KCNQ2 Cure volunteer