A National Institutes of Health (NIH) website defines Rett syndrome as a neurodevelopmental disorder affecting girls almost exclusively. It’s characterized, explains NIH, by “normal early growth and development followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems walking, seizures, and intellectual ability.”
Gregg Olson of Amboy, Minnesota, has a five-year-old granddaughter with Rett syndrome. In an interview, he said, “Evie can’t walk or talk, but she can make sounds. She often has more frustration than most girls because she has to look at things to be able to tell you she wants them. She can roll on the floor, but can’t really crawl anymore. And it will get worse.”
His granddaughter’s life expectancy will be like other American girls until her mid-20s, he said, but after that she has a greater risk of death. Olson has heard of women in their 40s with Rett syndrome. According to NIH, the disorder affects one live female birth in about 10,000.
“Evie is a wonderful little girl,” he said. “She’s taught me to take joy in the smallest things. An average five-year-old girl would be yelling and running around and carrying on, for example, but if Evie looks at me and giggles, I get a tremendous reward. She’s also taught me to not look too far into the future. For instance, when she was first diagnosed, the doctors talked about her having seizures and the idea of my granddaughter having seizures just blew me away. But a (church prayer) group helped me through that. I now enjoy her for who she is right now. I enjoy whatever time I get to spend with her.”
Olson also has begun looking at the bright side of situations normally not seen as bright. His granddaughter had a feeding tube installed, and although that wasn’t Olson’s ideal, Evie no longer has to experience the foul taste of her medicine. It goes directly into her stomach.
He offered this advice to parents: “First, don’t try to understand why this has happened to you because you won’t be able to understand. Just know that God doesn’t make mistakes and you didn’t do anything wrong. Also, we’ve gone through tremendous ups and downs over the last five years and sometimes the downs have been brutal. Pray for calm in the midst of the storm.”