RETT SYNDROME AWARENESS MONTH
Rett Syndrome Awareness Month is an annual designation observed in October. Rett Syndrome is a very rare, non-inherited genetic disorder that occurs almost exclusively in girls. It generally sets in between 6 and 18 months of age, and usually, family members don’t see it coming. People who live with Rett Syndrome are presented with many challenges that make daily life difficult. Signs and symptoms include losing the ability to walk and talk, and difficulty eating and breathing. This devastating disorder only affects about 1 in every 10,000 girls worldwide.
Having a family member with Rett Syndrome can be difficult. They often have behavioral problems and extreme levels of anxiety because they can hear and understand us, but cannot respond or move well on their own. Here are a few ways that you can help your child, sibling, or friend with Rett Syndrome ease some anxiety and depression.
- Socialize. It’s important that kids spend time with their peers, but when they can’t talk, it makes things difficult. Try teaching them yes and no with the direction they move their eyes, or even giving them a choice board so they can point to their answers. Taking a trip to the movie theater with friends is also a good idea because speaking will be kept to the minimal from both ends.
- Be active. Again, this is something that can be hard when a child has trouble moving on their own. But, if you can help them on a short walk, go for a swim, or even ride horses, it can help with both physical and mental strength. Plus, it’s something the whole family can enjoy together.
- Keep learning and be mindful. There is always new research being done, and hopefully, someday, a cure or better treatment will be discovered. The more you learn and are aware of what is truly going on in your child’s mind and body, the better you can react in ways that will make them feel comfortable.
HOW TO OBSERVE
Use #RettSyndromeAwareness to post on social media. Find out if there are any fundraisers in your area this month to raise money for this disorder, and donate if you can. If you know someone who is living with Rett Syndrome, contact their families and let them know you’d like to set up a day to spend a little time with them. It will make their day!
The earliest recorded declaration of Rett Syndrome Awareness Month was in October 1997, when then governor of Texas George Bush signed the proclamation. Since then, many state politicians have jumped on board by signing proclamations.