Long before the “days of COVID” we knew about living in a solitary space.  By “we” I mean my son and, by association, our family because he is a boy living with Rett Syndrome. Initially, the feeling of not being able to draw from the well of collective parenting wisdom, which I had so easily accessed while raising my older children, was pretty upsetting. It was kind of like taking a detour to Antarctica. There was absolutely no roadmap for the path ahead and there still isn’t. So, we have had to become accustomed to more uncertainty than is the norm.

There was a gem of a movie a few years back called Meet the Robinsons. The protagonist, Lewis, is a little boy, who opens a fortune cookie with a message that reads “Keep Moving Forward.” I believe that this may be the ultimate quote to describe what it’s like for families living with Rett Syndrome.

Receiving a correct diagnosis for families of males who have Rett Syndrome can be a challenge and we were no exception. Like all caregivers of individual’s living with Rett Syndrome, we started off with a plan of action for our son but I often needed to squeeze in answers like, “yes, my son actually does have Rett Syndrome” and “it is possible even if your information suggests otherwise.” There was a period of time that I used to carry a copy of my son’s genetic testing results to all-new doctor visits but things seem to be getting better as more information is available.

Over the past four years, I have made contact with over 40 families who care and have cared for males living with Rett Syndrome and around 20 more with a Rett related diagnosis. Thankfully, many of the Rett Syndrome nonprofits, like GP2Cure have made great efforts to utilize more inclusive language and this has helped the families reach out and connect with each other through social media. These shared connections have been an antidote for isolation at times. The shared ideas and encouragement from my fellow parents has given me fresh ideas as to how to approach things like health issues, special diets, behavioral concerns, communication needs, educational needs, and sleep issues. I have also received a lot of helpful guidance from parents of females with Rett Syndrome on other family support pages over the years, as well.

There are infants up to middle-aged men living with Rett. At my last count, there are at least ten adult males and quite a few teenagers. It also brings me great sadness to say that we have lost quite a few of the boys in recent years, four have passed away since last January. So many of their sweet faces are in the pictures of our group, reminding us that there is a family grieving a profound loss behind every person we have lost to the effects of Rett Syndrome. It is my sincere hope that the boys will be prioritized equally when scientific advances are made in the future of Rett Syndrome.

Currently, there are two Facebook groups for males living with Rett Syndrome, one is an information page called Boys with Rett Syndrome Support and Education. The other is a private group dedicated to parents and caregivers of males (living or deceased) with Rett Syndrome. If you are a parent of a male with Rett Syndrome, I really encourage you to take a look at the Boys with Rett Syndrome Support and Education page.