“Your child has Rett Syndrome.” Many of us first hear these words across the desk of a pediatric neurologist or geneticist, as we sit holding our little one in our arms. Or a voicemail informs us, “The Rett test was positive.” Perhaps Rett is a name that was new to you, or perhaps it was already familiar from late night online searches, reading, mentally checking off symptoms, with an ever-present sickening anxiety in the pit of your stomach. The implications of this disorder send shockwaves of sorrow and fear through parents’ souls. We understand the feelings that begin with the diagnosis of Rett Syndrome. We have lived them.
The trajectory of our expectations is irrevocably changed, and our lives are shaken. And yet, for many of us, the love and protective instincts toward our children become stronger and fiercer. We want you to understand that you are not alone, and that with this terrible diagnosis comes an unexpected gift of hope: the reversal of Rett Syndrome.
The Rett Syndrome Research Trust was established in response to the research breakthrough in 2007 that demonstrated the disappearance of Rett’s multitude of symptoms, and this is the future toward which we work tirelessly for our children.
Families faced with Rett Syndrome are found all over the world. You will meet parents and children whose daily challenges and emotions are instantly recognizable. They may be a few blocks or thousands of miles away. Whether in person or by phone or email, or through social media, websites, personal blogs, connection with others on this path will provide you with a steady stream of emotional support, understanding and resources that are continually being evaluated and updated by those who use them. Rett Syndrome does not erase the individuality of the people affected by it, and responses vary accordingly. The ability to network vastly enriches the scope and depth of experience and information families can share with each other. There is no single “right” way to get through a day, a week, a year with Rett Syndrome. But there are parents who are walking next to you, or perhaps a few steps ahead, who can be counted on to accompany you on this journey all the way to a cure.
Monica Coenraads, Executive Director of RSRT, is one such parent, and you may contact her anytime.
