When I was a little girl, each night I would ask myself, “when Michelle wakes up in the morning, will she be all better?” Will we be able to run around together, play dress up, and my little ponies? To talk to each other like sisters do? She was diagnosed with Rett in 1986, at the age of three and a half years old. Michelle is a Rett warrior, a daughter, a sister, an aunt, and the strongest woman I know.
There were things we never got to do, but there was so much more that we were able to. The memories that we all cherish. Family trips to the beach, afternoon swims in the pool. Michelle loves the water. Countless bubble baths. Tea parties with our stuffed animal friends. Swinging on our swing set. Collecting wildflowers along the beach. Living room picnics. Many trips to the Shriner’s Hospital. On nights when I could not sleep, I’d make my way to Michelle’s room to snuggle up and watch one of her favorite movies with her, The Little Mermaid, An American Tale, or Cinderella. Her quiet and faithful presence was always a comfort that I’ll never forget. There were hard memories, too. The uncertainties of Rett. Nights of ceaseless crying and wondering how to get over the next hurdle that Rett would throw at Michelle. Time after time, she’d persevere. Once someone said to me, “I’m so sorry about your sister, that must be such a burden.” My immediate response was, “She is my sister, she is never a burden to me or my family.” Being a Rett sibling wasn’t always easy and our life may not have been “normal”, but it was filled with love and hope.
As I grew older, it was understood that Michelle would not just wake up and be all “better.” But that didn’t mean our family lost hope. We poured over the early research of reversal of Rett in mice. I remember watching the videos in tears. In 2007, I was a senior in college. I wrote a report about Rett and gave a presentation on the recent study. I could hardly stay composed, the emotions took over as I described all that Rett had taken from my sister, and that now there was a glimmer of hope for a cure. As I walked out the door, my professor thanked me for sharing her story. This was one of many times Michelle’s journey through Rett inspired those she had never met.
As the years passed, my own family has grown. My children adore their Aunt Michelle. She now has two nieces and two nephews. They have learned so much from her. We never lose our hope. We fight for it, even on the days when it seems that it’s just too far beyond reach. But most importantly, we cherish Michelle. We support her, love her, and thank her. We wouldn’t be who are today without her and the lessons that she’s bestowed upon us. Through Michelle, we’ve come to be more loving, patient, empathetic, and accepting. We are proud of the fighter Michelle is and always has been. We are so grateful for the Rett community we’ve gained through GP2C, a group that rallies with such a strong sense of hope for a cure. We’re here to keep fighting the good fight, for Michelle and all of the amazing Rett warriors.