ABOUT ME !
|Hi my name is Ian Paul
Lewis. I am 8 years old and have a rare disease called Spinal
Muscular Atrophy (Type 2/3). The 2 is because my respiratory in
weaker than most type 3's, but a 3 because my physical strength is like
a type 3.
You may be wondering what Spinal Muscular Atrophy is (SMA)? SMA is a neuromuscular disease that makes my muscles weaker. They can not get stronger, but will weaken. I use to be able to do more things than I can now. When I was 2-3 years old I could ride a mini Bigwheels!! Sadly I wasn't able to do that for long. I use to be able to walk around the blocks and walk uptown with my family just with a walker. That didn't last long either. I got to fatigued and fell too much that I needed a wheelchair for our walks.
Last year for the first half of first grade I could walk through the halls with my walker, but that too got to be too much. So now I use a powerchair at school. That is just some examples of how my muscles have weakened to physically limit me more.
Now for my respiratory, well that has been issues off and on since I was born. I use to have a lot of respiratory infections when I was a baby and toddler. Now I have weaker lungs that I have to sleep with a bi-pap on at night, use a cough assist to help me cough more productively, and a vest to help loosen stuff in my lungs. I also sleep with a pulse oximeter so my mom will know if I have trouble breathing or heart problems. I use to last year have a lot of problems, but after being on all the machines for a while things seem to have calmed down and my mom gets a little more sleep now!!
Now for the fun stuff I like to do and things I like!! I wasn't going to make you just read all the sad stuff about me, because my whole life isn't sad like that!! I am still a normal kid, my mind works just like any other child, and I like most boy things that other kids my age like. My favorite thing if you can tell is Harley Davidson. I hope to be able to ride one when I grow up. My mom thinks they are cool but they scare her. Not me though - I want to ride one and own one. That way I can ride it all the time!! I hope there is a cure so I can!!!
I also have done horseback riding, quit for a while, but plan on going back to it this spring. I am really good at, and won some ribbons in a horse show contest I did. It is really fun!!
I like other things, like Pokemon, yu-gi-oh, and playing outside with my friends. I make friends pretty easily even though I can not run and jump like them, they still like the same things I do so we use our imaginations together and have lots of fun!!
And I go to school like all other kids my age. I am in the 2nd grade and think of school probably the same as most kids. Well maybe not my older brother Mitch he loves school!! I only go because I have to, but I am doing good in school.
Speaking of my brother Mitch, he is almost 10 and doesn't have SMA. He is in Karate and is doing pretty good. We play and argue a lot like most brothers do. Mitch is a good brother though and does a lot to help me out when I ask him. The best thing is how we play video games together. I love playing Sonic with him. We beat one of the games pretty fast playing together.
Mitch is not my only brother, I also have a little brother who is 4. His name is Andy. He is a cute little kid, and we play a lot too. Andy really just wants to be like me, powerchair and all. I try to tell him different but right now that is how he thinks. Someday he will find out he doesn't want to be exactly like me. I am glad he looks up to me so much though. I like him a lot!! He also tries to help me out a lot. All out my brothers are the best brothers to have!!