I got to spend a day with two pretty amazing ladies this weekend, Annie and Mikyla. One of them I went to high school with…..and one of them is too young to know what pegging your jeans is, or that Vanilla Ice tried to rap, and not just flip houses on some crappy show on HGTV…..wish I could say the same. These two must be pretty cool, because I did several things that are out of normal range of behavior. I went in the sun. The SUN! I have managed to avoid that to the point of becoming damn near albino. I walked…like….far-ish. Up a hill, even! I went onto the beach. Yes, I was THAT girl that had to remove her Converse to go on the sand….but I did it. Feet in the water and everything. I also did some things that were a little more my thing…..I whined. 🙂 It was the sweating. I hate sweating. But Annie politely put up with my whining and we sang some James Brown, and blew some bubbles, and had some tiramisu. Aside from a sea creature trying to eat Mikyla’s feet without our knowledge and Mikyla taking a giant bubble right to the eye, it was a good day.
It was so nice to finally be able to meet Mikyla, after talking with Annie about her, and seeing her pictures on facebook. She is just as sweet as Annie said, and her laugh is one of the cutest things I have ever heard. I have a theory that Mikyla is such an amazing little girl because she has two pretty amazing parents. You see, Mikyla has Rett Syndrome, a neurodevelopmental disorder that affects only girls. You can read more about what Rett Syndrome is here…. but, some of the more noticeable symptoms are loss of purposeful movement of the hands and the ability to speak. Mikyla’s parents, Robert and Annie, have worked tirelessly advocating for their daughter and other girls with Rett Syndrome, and created a non-profit that raises money to fund research to find a cure…..
www.mikyla-cure.org. You can go there to learn more about Mikyla, about Rett, and to donate to help make the cure happen for these girls and their families.