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
Back in 2000, my colleague Kate Scorgie and I published some research on how having a child with significant disabilities changed the lives of parents in some positive ways. A lot had already been written about the stress, sorrow, and other negative aspects of parenting a child with a disability, but we felt there were also some very positive parts of the experience that needed to be acknowledged. We found that children with disabilities transformed their parents’ lives in some positive ways.
Since then there has been a lot of discussion and analysis of this process of transformation. Some have suggested that these positive changes in parents lives are not real, but a rationalization to cope with the negative aspects of the experience. This month, some of my colleagues and I published a study that attempts to test whether the beneficial aspects are real or not, and the results confirm the benefits reported 14 years earlier. The results are summarized below: Continue reading