Monday, February 28, 2011

Rain, rain go away! And, Rare Disease Day!

Today is a very rainy day! I don't like rain because my mom won't let me play outside when everything is wet. She won't even let me sit on the balcony to do my school work, even though it doesn't get wet under there! I'm supposed to be doing school work right now, but my mom is working in her office, so she can't see that I'm blogging instead. My brother and sister are arguing over what tv show to watch. I bet mom comes out to yell at them soon because they are supposed to be doing a science project. Elyssa and Elijah are twelve. They're also twins, but the only thing that's similar about them is that they have LFS too.

Usually, I really miss going to school with my friends, but not on rainy days like today. On rainy days at school, we either have to spend recess inside playing baby games like Heads Up, 7 Up or we have to stay on the black top because the playground gets all muddy. I feel good today, so maybe my mom will let me have a "recess" to play Just Dance on the Wii. Sometimes Elyssa plays with me. She's a really good dancer, so it's really fun when I beat her. What do you do for fun on a rainy day?

Ooh! Elyssa just took a picture of me blogging! Now I have to be really nice to her so she won't show mom!

Today is also Rare Disease Day. There are approximately 7,000 rare diseases that are known. Rare Disease Day promotes awareness and fundraising. There are lots of diseases out there, like mine, that very little is known about it. It makes it hard for doctors to treat and correctly diagnose rare diseases because so little is known about them. I'm lucky, though, because my disease is treatable. There are some diseases that have no treatment at all. If you or someone you know has a rare disease, my thoughts are with you today. My mom says we can have ice cream later to celebrate. 


  1. Salut, Taylor! It's nice getting to know you!
    Yes, it's raining here, too. While my friends hate it, I love it. My hometown is home to incessant rain storms.
    Thanks for posting about Rare Disease Day. Although she has epilepsy (I'm not sure if that qualifies as a rare disease or not), my friend Lilly very much appreciates this post.

  2. Hi, Sabine! My mom says a "rare disease" is one that affects less than 200,000 people in the United States. I had to go ask her. So I don't think epilepsy counts, but I know epilepsy can be tough to deal with. My brother had seizures because of a tumor. They are really scary!

  3. I haven't been sick in almost 3 months. :) When my family gets sick I'm tghe last one to get sick.:P

  4. Hi Tay! Is that your laptop or do you share?? How are you feeling? :) I'm soooo homesick.

  5. My mom got it for me to do my home school online program, but sometimes she takes it away because I spend too much time playing games instead of studying.