October is an important month for many reasons. It’s Breast Cancer Awareness month, Rosh Hashanah, LGBT History month, and Health Literacy month to name a few. But there’s a certain neurological disorder that raises awareness in the month of October, one that may not sound so familiar. October is also Rett Syndrome Awareness month. You may have seen a purple ribbon or two this month, but the fact of the matter is, Rett Syndrome is not nearly as well known as it should be. Here’s why: Rett Syndrome is a rare genetic disorder that is almost exclusively diagnosed in females aged 6 to 18 months. A Rett Syndrome baby starts to regress in her development during the early stages of her life, which means she could have begun walking and talking before the disease starts to take over. So when the diagnosis is confirmed, it can truly be a parent’s worst nightmare.
While Rett Syndrome babies may never truly live a normal life, that doesn’t keep these girls from living happily! Girls with Rett Syndrome require a lot of care; many of them have trouble sleeping and eating, so it’s important for families to have the proper medical equipment to take care of them. Many girls require feeding tubes when they sleep, if they sleep at all. It’s common for the girls to have unexplained fits of crying and screaming, which is difficult for all members of the party, parents and children alike. But, some of the symptoms aren’t so bad. In addition to the screaming fits, they can also experience unexplained fits of laughter, which can brighten anyone’s day! Young girls with Rett Syndrome can have the same experiences as other girls their own age; they’re just a bit more fragile and have a difficult time communicating their feelings to those around them.
It’s difficult having to live with the fact that these children don’t have a clear way to communicate what they’re thinking. Because many girls experience certain forms of paralysis, and they have a very difficult time learning, they don’t have the ability to use any form of sign language. But luckily with today’s technology, doctors are working with Rett Syndrome girls on communicating on a desk top with the use of their eyes! These computers are able to sense the directions in which their eyes move, so they are able to tell their parents exactly what they need. It’s hardly anything compared to having the ability to hear their daughter’s voice, but it surely is a huge step in the right direction!
According to recent statistics, 1 in a little over 10,000 girls are born with Rett Syndrome. Currently there is no cure for the genetic disorder, but that doesn’t mean that efforts aren’t being made! In fact, here in Massachusetts, our very own Boston Children’s has one of the best Rett Syndrome Programs in the whole country. Girls with Rett Syndrome have a huge amount of support behind them, but every little bit counts. Every year there are hundreds of walks held across the country to raise money for a cure. However, you don’t even need to leave your room to make a difference in the life of a girl living with Rett Syndrome.
If you’re interested in learning more about Rett Syndrome, and what you can do to help, visit Rettsyndrome.org and donate towards a cure!