BaByLeTtE's blog: "BaByLeTtE's Blogs"

This is to all my friends, all of my friends' friends, and so on and so forth. I say that because I'm asking all of my friends to pass this on. (I'll be putting this in my bulliten and also messaging it to everyone on my friend's list) I don't know exactly how to say what it is I want to say so just bear with me please. I am asking each and eveyone of you for help. Most of you... well my friends anyways already know this but for the rest of you this bit is to inform you of my situation and why I'm asking for help. This is true and real I promise and I'll be leaving a link as well to show this is real. I doing this to ask for help as well as raise awareness of a disease called Spinal Muscular Atrophy. Most people don't even know of it. I've heard it called the "common uncommon disease". I have a daughter, and her name is Ariyana. She is the most beautiful and unique little girl you'd ever meet. She was born healthy (or so I thought) and with no complications. She had a normal infancy, but when she started to walk I noticed something was wrong. I had friends who had children her age and around her age who were doing things she couldn't do, and she was falling a lot. So I went to her pediatrition and brought this to his attention. They gave me every excuse in the book as to what was wrong with my child, but I wasn't buying it. After about three months they finally sent her to Childrens hospital in New Orleans. Where I was going for about 9 months with the same story. We were going to do therapy and see if she gets better. So for 9 months I'm thinking I'm helping her, and I can do something to help her. Finally after those 9 months and still no change her artopedic specialist sent her to a Neurologist. Which was a releif but also worried me. We went through a series of tests, and found out May 27, 2005 (it still amazes me on how easily I can remember that date) that she had Spinal Muscular Atrophy II/III. I'd never see her run or jump or climb or anything! My world was shattered. Infact it's going to get worse. She will someday be in a wheelchair, and possibly worse. Since then I've come to realize that it's not AS bad as it could have been, but when it is your child it's still the end of the world. All I can think about is how many things all of us, including myself, have taken for granted our whole lives. I have never felt as hopeless as I have since I've found out. I've felt like there is nothing I can do because I can't cure her and make her better, but I was thinking I can do something I can raise awareness and ask for help. So here is where I'm asking for help. There is a foundation called Familes Of Spinal Muscular Atrophy (FSMA) who raises money then funds it to find a cure. That's right there is no cure, but there is hope. You can go to their website and there is things they sell. My favorite is the SMA bands. Their bands just like the cure cancer bands and hope and all that stuff... their half red and half black and they say "Cure SMA" on them their only 2 dollars and trust me every penny counts. The have other things on there. And quite a few of them have been done by children like my daughter. Children who also live with Spinal Muscular Atrophy. They also take donations. They even have walk and roll athons.. You can also get more info on it at this site. There is so many ways to help. You can go to this web site read more on it, and hopefully you'll want to be involved. The website itself is: www.fsma.org The fundraising and merchandise is: http://www.fsma.org/fundraise.shtml The bracelets: http://www.fsma.org/bracelet2005.shtml Also if your like to contact me my myspace is liber_ex_fatum Hotmail: ariyanasmom@hotmail.com Yahoo: liber_ex_fatum I greatly appreciate you just taking the time to read this, and giving me the time and chance to let this known. Thank you! Sincerely, Marylynne