Blue Sky Day: Reaching for the stars with Rett syndrome

By Melinda Lancaster Every mountaintop is within reach if you just keep climbing. —Barry Finlay (award-winning author and mountain climber) On October 11, families and researchers will join together at the steps of Gordon Hall, on the campus of Harvard Medical School, to bring awareness to the struggle of our children with Rett syndrome. As our Blue Sky Girls (and one boy) begin their symbolic climb up the stairs, we are reminded of the effort researchers, parents, caregivers and especially the children themselves make on a daily basis to go onward and upward toward a goal once thought unreachable. Rett syndrome is a devastating neurological disorder that affects approximately 1 in 10,000 girls and a smaller number of boys. Characterized by a loss of skills—including hand use, the ability to speak and in many cases the ability to walk—it can lead to seizures, breathing abnormalities, curvature of the spine and cardiac issues. The first Blue Sky Girls was organized in 2011; our group in Boston has a boy, so we call it Blue Sky Day. When I joined the first Blue Sky Day, I was leery. Would my Katelin, my daughter, make it up those stairs? There were so many. She did, screaming all the way to the top. And I think that shows how scary this journey into the unknown can be. And yet, in the words of preacher Vince Havner, “The vision must be followed by the venture. It is not enough to stare up the steps—we must step up the stairs.” I’m thankful for those parents and ...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: All posts rett syndrome Source Type: news