Hi! My name is Emma. I am almost 7 years old and have a pretty awesome life (I mean, seriously, look at how happy I am ^). However, I am forced to live with Rett Syndrome. I'm sure you're all wondering what Rett Syndrome is, so please, allow me to fill you in on the facts.
Rett Syndrome is a X-Chromosome mutation that affects little girls almost exclusively. Boys lack an extra X-Chromosome, resulting in miscarriage, still birth or early childhood death. Rett's causes regression where children should be progressing. Such as, mobility and language development. This is where I am different. All the other little girls my age that suffer from Rett's are already in wheelchairs or close to being so. I am still running and playing. I still regress, just not as quickly. It's a very complicated situation, I'm sure you can understand why. Not only is Rett's currently incurable, but I have the most unique strain of it currently to date.
So, my Family is trying to raise not only Awareness but Funds to help find a cure for all of the Rock stars out there that live with Rett Syndrome. They are confident that, eventually, we can get there and save thousands of children for generations to come. Please feel free to Follow us on our journey to Rett Syndrome Awareness (with crossed fingers) and it's Cure.