I remember getting the diagnosis like it was yesterday. My wife Cari and I knew something was different about our precious Carmela, and we suspected it was Rett syndrome, yet we held out hope that we were wrong. Then the genetic counselor called and told us she wanted to give us some news in person. Our hearts sank, and we knew that our hopes were in vain. Carmela had Rett syndrome.
The day we received the diagnosis, I found myself on www.ReverseRett.org, following the directions for newly diagnosed families. I registered, then I called the phone number. I expected to get a menu of options and then finally be connected to a recording that told us to go to the website to learn more. The kind of circular nightmare we’re all used to these days. Instead, Monica answered and talked to us for several hours. And by the end of our conversation, hope had returned to our lives.
I am a musician, and oftentimes I will use songwriting as a way to work through difficult situations in my life. On my latest album, Grown Up Love, there are two songs that emerged directly from my family’s experience with Rett syndrome. “The Diagnosis” deals with my immediate reaction to the news — the refrain includes the line “hope will light the way on the darkest of all days.” I don’t believe I could have sung that without my transformative phone conversation with Monica. “Lucky Us” is an understated anthem I wrote to remind myself to remain grateful for all the beauty in our lives, despite our burdens. Thanks to family, new friends in the Rett community, and RSRT we feel so lucky.
Another blessing of connecting to RSRT was starting our fundraising campaign, A Cure for Carmela. Tim helped us set it up, and we sent it out to all our friends and family, many of whom we hadn’t talked to or seen in years. The outpouring of support was monumental. Big help came from the most unexpected places, and we rekindled ancient relationships with long-lost friends.
Thank you, RSRT, for being a beacon of hope lighting the way through our darkest days.