Thursday, September 16, 2010

Spinal Muscular Atrophy Blog Party

Since I am new to blogging, I'm not entirely sure what a "blog party" is all about but I like parties, especially when a lot of my friends are attending, so I'll try it.
According to the rules of this party, I'm supposed to tell you about Spinal Muscular Atrophy (SMA). I can do that!! If you want a lot of facts and information on SMA, check out THIS PAGE that I put on almost all the websites I design (more on that in a bit). What I like to tell children when they ask "what is wrong with you?" or "Mommy, what happened to her?" (for the record, this does NOT offend me but I think I could save that for an entire post) is below.
"You have just heard about SMA and are now wondering what that is. SMA is a short way of saying a really long word. SMA stands for Spinal Muscular Atrophy, which is why everyone just says SMA. SMA is like an illness that you can’t catch, so don’t worry. People are born with SMA. Kids with SMA are just like everyone else, they just do things differently. Kids with SMA use wheelchairs to move. Kids with SMA don’t have a lot of muscles. Think about how big your muscles are right now and now imagine what it would be like if you didn’t have any. When you are a baby, you have tiny muscles that don’t work well but they grow bigger as you get older. In kids with SMA their muscles don’t grow. They have little muscles because their muscles didn’t get the message from the brain to grow. Thankfully, the brain isn’t a muscle so kids with SMA are smart and love to talk and laugh and sometimes even tell jokes. Everything you do involves muscles like how you eat, how you move, and even how you talk. Any movement is hard when you have no muscles, so doctors are trying to find a way to make the muscles grow bigger. You can help by raising money to help the doctors find a medicine to help the muscles grow bigger and stronger so that kids with SMA can be just like you."

I was diagnosed with SMA type at 6 months of age. No one in my family had ever heard of it until I came along. My little sister, Emma, also had SMA but flew to heaven when she was 3 years old. I'm not going to bore enlighten you with the details of my life; I'm saving it for the Lifetime miniseries about my life. ;) But I DO want to tell you about this amazing little community that I am so honored to be a part of.

I didn't necessarily want to be a member in this not-so exclusive club but here I sit, currently in my favorite place on earth, my Grandma's home - in "my" room, with a cool breeze blowing in on me. The SMA community is a club and a family with members from all parts of the earth. It houses members from every class, religious belief, gender, political view, and race. I'm proud to be a member of this club...I get to be a part of so many amazing people's lives.
By the time I was in my mid teens, I wanted to be more than just a passive member of this club. I wanted to do something, give back, help people and that is exactly what I did. With help from Brenda (see previous post if, by some odd black hole/time warp thing, you have no idea who she is), her family, my family, and friends, we started B4SMA. B4SMA is an organization that sends blankets to children, up to age 21, with SMA from around the world. In a little over 5 years we have sent over 800 blankets to countries ranging from Canada to Japan, South Africa to Iceland, Solvenia to Brazil, and of course many other countries including the United States. It is a very rewarding venture and we will continue to do it until a cure is found.
Unfortunately I was still yearning to do more...but what? I mean, as a high school junior, I didn't have money, I didn't have connections, I didn't have a career. But I did have a computer and creativity yearning to be let loose on the world. My dear friend, Laura, ran an organization called Our SMA Angels that provided web space to families dealing with SMA. The web space was free and unlimited. Laura created Our SMA Angels in honor and memory of her sons, Devon & Sidney. I wanted to help her continue this amazing work and, after a bit of pushing (the tenacity for which most certainly came from my mother), she allowed to me be a part of her previously one-woman team. Since then, I have become the head designer on new websites and also help with upkeep of older ones. None of that would be possible without Brenda and my (sorry, falling back to my middle school days) BFF, Kim J. Kim helps update older websites and walked me through my earliest frustrations with FrontPage. She, too, has earned a post all about her, eventually. My creativity comes naturally from my extraordinarily artistic father, who is the visual manager at a place that could easily be described as a child's wonderland. He is fantastic at his job and, although we are creatively very different from each other, always praises me on my work. He's my dad, he has to. I'm not entirely sure how many sites I have designed/updated/maintain but I think it is close to 90.
For me, however, enough is never quite enough when it comes to helping others. My creative energy wanted more and more! I couldn't really find a suitable outlet for the wants and desires...Enter Shelle, mom to Logan. I can't begin to describe what Logan means to me in this already too long post, so you will have to wait. Anyway, Shelle said that they were needing T-shirts for a fundraiser and wanted to know if I could do that. Umm, sure? I mean I could try. It was so much fun that I created a store at Caf├ęPress and recently expanded to Zazzle.
My latest, although I've been doing it for a little over 3 years now, venture is making videos. It is my latest and greatest passion...for now. I make videos for SMA families mostly but I have made a few about myself and my family.
For now this fills up my time but I'm certain that in time I will want to do more. Perhaps a book or something...Who knows what lies in my future but I am certain of one thing, I will be a member of this community until the community is no more.

Want to know more about SMA?? Watch this!

2 comments:

Lucy and Ethel said...

Love the blog(!) and am so glad to know you won't have ANY spare time now! I was gettin' skeered you and Brenda would have way too much time on your hands....

'Lucy'

Becky's Big Bytes said...

I am so impressed by your blog (I need to call you for some advice on mine!). Keep on blogging as we all want to hear your stories. Times like these I am so happy the internet was invented.
Beautiful!