Understanding Rett Syndrome

Rett Syndrome is estimated to affect 1 in 10,000 female babies, across all racial and ethnic groups worldwide. In reality, babies appear to develop normally for the first 6 to 18 months of their lives, learning to walk, talk and interact. In most occasions, parents only become aware to a problem during the period when their child's skills begin to regress and/or stop developing all together.

I learned about Rett Syndrome through meeting Theresa, Lisa and John. Theresa and Lisa are wonderful, loving parents who have committed their lives to raising Lisa in their home. Their role as parents extend to primary caregivers and guardians. Through my interactions with them and their extended family, I became acquainted and educated. Theresa mentioned that at first, the symptoms appear to be very similar to autism, which is what Lisa was initially diagnosed to have. It was not until years later, when they were finally diagnosed with Rett Syndrome. I say they, because, they are all affected as a family. Many of us out there, may not know of this rare disorder and I felt determined to share it with everyone. Nevertheless, through Theresa and John, I quickly understood what it takes to care for a child with Rett Syndrome. Many families out there are just like The Bartolotta(s), who continue to strive daily and take on things one step at a time. 

Lets go back to the basics. Many of you may ask, what is Rett Syndrome? Rett Syndrome is a disorder that affects development and brain function. Now, the syndrome mainly effects females, but there are rare occasions when males are effected. There is no cure (as yet) for Rett Syndrome and at present, the research for cure continues. However,  there are ways to improve a child's symptoms through treatment. The treatments vary on how severe the syndrome is in the child.

Image Source: RSRT (Rett Syndrome Research Trust)

Again, Rett Syndrome is a very rare syndrome, but as we all know, there is always a probability, just like anything in life. Birthrate is increasing faster than ever, and I truly believe that this is something that a parent, soon-to-be-parents, or any planning parents should care to learn about. 

For more information, please check out RettSyndrome.org and RSRT.org. Theresa, also wrote about her (and John's) experience in an article she wrote for NY Times Parenting Blog / Motherlode: "A Disabled Child, and an Always Uncertain Future."