I feel very lucky that in my role at RSRT I get to talk and meet with a lot of families that have a child with Rett Syndrome. Every time I have a conversation with these fellow parents I learn something new and am inspired by their strength and by their commitment to helping us push forward with the research.
A common theme that comes up in our conversations is the tremendous pride we have in our children. Forgive me if I get overly sentimental, but I know all you other parents are right there with me. I could not be prouder of my daughter—she’s 10, and her name is Eleanor. I’m proud of her every moment of every day. When she smiles at me, I’m proud as can be. When she manages to pick something up with shaky hands, I’m positively beaming. When her physical therapist reports that she walked 20 yards in her Rifton at school, I’m bursting. But far more than any achievements, I’m overwhelmed with pride at who she is, at what she faces every day with incredible strength, at the remarkable personality that shines through despite this terrible disorder that she must fight. I don’t hold back in my praise. Eleanor and I like to grocery shop together. I talk to her the whole time, asking her what kind of cereal we should get and what fruit to buy. Sometimes she glances at a cereal box and helps me choose. I tell her how proud I am. I think the store clerks think I’m crazy. I don’t care.
Even families that I only talk to once a year or less I feel a bond with because of our shared challenges, our love for and pride in our children, and our common enemy—Rett Syndrome. With regard to that enemy, I will add this: pride in our children exactly the way they are and wanting the research to change their lives are not mutually exclusive. They’re anything but. I’m immensely proud of Eleanor, and I am 100% behind this research because I know it has the capacity to liberate her from some of the great weight that Rett bears on her.
I’m not Pollyanna-ish about it. I don’t expect that when we have a successful scientific approach it’s going to be like Rett Syndrome was completely erased for her. But I’m highly optimistic that the research that RSRT is spurring can have a profound impact on her life. It’s why I’m all in. It’s why my wife and I give as generously as we can to RSRT. It’s why every year we ask all our friends and family to support RSRT. It’s why I work for RSRT, and feel incredibly fortunate to do so. Because I’m confident as hell that one day the research that RSRT is spurring will get there—for Eleanor, for all our children. So my plea to you if you’re not involved with us—get involved, take action, want change, be part of the change, and never ever stop being proud of your child for exactly who she or he is.