Rett syndrome: communication without words

I met Maria and her daughter Antonia at the very beginning of their rehabilitation in our center. At first glance, I was attracted by the large, deep eyes of Masha’s. But Antonia’s eyes… It cannot be explained, it must be seen! There is such a depth that I probably met only a few times in my life before.

Later Masha said that they say about children with Rett syndrome: “These are children who communicate with their eyes.” It’s definitely true. Without words and some emotional manifestations, Antonia penetrates with her eyes into the very core and wakes up something wonderful… At that moment, the concept of “eye contact” was filled with a much deeper meaning for me.

The baby is the fourth child in the family. She came to the rehabilitation in ADELI for the first time. Mom says that there is no intensive rehabilitation for such babies in the country of their residence. Children are treated very tenderly, as if trying not to overwork. I have heard this before from our patients parents from different countries. At the ADELI center we adhere to the optimal therapy regimen: neither more nor less. Too much load can lead to a decrease in the effect and even “rollback”. As one of our mothers put it, “they overdosed the child,” talking about too intense daily treatments. Too little load gives little or no effect. In this sense, our therapists approach each patient very individually, relying on the capabilities of each baby – endurance, age, condition, and relevant skills. We always try to feel the fine line between underload and overload. We also understand when the baby is not able to do this or that exercise, or is simply lazy and manipulating.

In the case of Rett syndrome, most families work to maintain the actual condition, to strengthen the muscles as much as possible, to prevent deterioration. And everyone, of course, is looking forward to a breakthrough in medicine, such as Zolgensma in the case of spinal muscular atrophy (SMA). We also hope and believe that soon there will be a medicine to help “rettics” and children will be able to express themselves not only with their eyes, but also in all other ways that are peculiar to humans.