Like other grandparents who faced a diagnosis of Rett Syndrome, I was initially devastated. My granddaughter Magnolia would not have the life I dreamed for her. I wouldn’t see her walk down an aisle or celebrate those typical life events most grandparents get to savor. The impact on my son, I recognized, was also likely traumatic and many of my dreams for him would also have to change, unless of course, Rett Syndrome could be cured. Quickly, I focused on things I could do to accelerate a cure and feel like I was doing everything possible to help Maggie and other Rett sufferers. Surprisingly, the changes to my life have been profound.
I have become more appreciative of little things like the joy a smile can bring; watching Maggie “shake it off” with Taylor Swift; or the days and minutes where she doesn’t have breathing problems. I have grown appreciative of things that wouldn’t have mattered much prior to Maggie’s diagnosis. One such thing is the power of prayer. Never having been particularly religious, this surprised me. I now do a daily prayer for Maggie and all Rett patients and their families.
I have been surprised over and over again by friends’ and relatives’ generosity. There were those who sponsored events to raise money for the Rett Syndrome Research Trust and one who successfully lobbied for federal funding of Rett Syndrome Research. There is the friend who asked for donations to RSRT in memory of his just deceased mother, and the many who have regularly made donations to find a cure. There are even more friends who have been supportive emotionally, always willing to lend an ear or simply ask how Maggie is doing.
It's hard to understate the pride I feel towards Maggie’s parents for their total dedication to making her life as good as possible, rich with typical experiences.
Perhaps most of all, I am extremely grateful for the RSRT team and the scientists they have funded. I consistently marvel that a handful of professionals have accomplished so much while providing hope to so many.
What this has all led me to is a renewed sense of purpose. I donate as generously as I can to RSRT. I attend fundraising events and invite friends to join me. I am constantly thinking of ways I might help raise money and awareness. I have time on my hands to research and reconnect with old friends who could potentially be helpful, having spent careers in a field that may have some relevance. Most Rett parents have at least one job, not including the very difficult job of raising a child with Rett. I have the luxury of time, having retired many moons ago, which I can simply donate to this cause.
So, for those Rett grandparents reading this who feel like there’s nothing you can do to help, you should know that you are wrong! Your friends and relatives will surprise you. Some will donate more than you could imagine; others will sponsor events you never would have thought of, and most will show you more compassion than you feel worthy of. You have the time. You have the motivation. You will be greatly rewarded. There’s nothing you won’t do for your grandchild. All you need to do is SOMETHING! Every day you delay potentially delays a cure by a day. By getting involved, you may find your life outlook improving, knowing that you have an important mission, not yet complete.