Blue Sky Day: Reaching for the stars with Rett syndrome

By Melinda Lancaster

UnknownEvery 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 researchers who, years ago, understood as Martin Luther King, Jr. did that “Faith is taking the first step, even when you don’t see the whole staircase” and started working for a better life for our children.

Unknown-1Here, in Boston, our families are joined by cheerleaders and firefighters who make sure that, however it can be done, our children make it to the top. We are also given the opportunity to meet the researchers who remain stalwart in their resolve to find treatments and a cure. Dr. Michela Fagiolini at Boston Children’s Hospital is one researcher who will speak at this event, bringing encouragement and optimism that progress is being made. In addition, we are lucky to have Boston Children’s Rett syndrome clinic and an innovative clinical trial led by its director, Dr. Walter Kaufmann. These researchers too are making sure our children reach the top.

But most of all, Blue Sky Day is, to me, a celebration, an overcoming of adversity and the knowledge that Katelin and I are not alone on this journey known as Rett syndrome. When I think of the researchers, doctors, parents, caregivers and especially the brave children who face huge staircases every day, I am reminded of a quote by President Lincoln:

“I have an irrepressible desire to live till I can be assured that the world is a little better for my having lived in it.”

The world is a better place because of all of them—especially the children who teach us, without words, what courage is all about.

To learn more about the Rett Syndrome Program at Boston Children’s Hospital, please visit this website.