Winter 2015-2016 has been heartbreaking for families affected by MECP2 Duplication Syndrome all around the Northern hemisphere. So many of our affected family members have been seriously ill, in critical care, and sadly some have not survived. It has been crushing for families directly affected, and even those not directly affected feel some of that pain. It has been hard to keep the light of hope burning for many of us.
As the father of one of the lucky ones, who have so far made it through this winter untouched, I feel empathy for the many families who are suffering now— but I also feel guilty about our family’s good fortune and feel afraid that our luck will change. It is really hard to know what to say to the families that are hurting so badly right now. No words seem adequate. As difficult as it may be at times, we need to hold on to hope, no matter what comes. Continue reading