My name is Sarah, I am a 32 year old girl living in Southern California. I am a Christian, an artist, a lover of sunshine, cool breezes, music, movies, and all the beauty of life. I am also living with a somewhat rare genetic disease called Spinal Muscular Atrophy; which is a fancy way of saying that my muscles are wasting away.

 

Since the day I was born, my muscles have slowly been getting weaker and weaker. My disease makes the most simple tasks [like getting dressed, eating food, and even breathing] difficult or impossible for me to do on my own. Until recently, there was no cure or treatment, but on June 5, 2019 I got my first dose of this life-changing medication called Spinraza, which allows people with SMA to slowly start building muscle again (I’m currently 4 doses in, and I have improved so much already!).

 

So, I navigate the world from the seat of my wheelchair, which for the most part, isn’t that bad. Don’t get me wrong, there are things about my disability that really suck, but those things don’t stop me from living a happy and fulfilling life. It’s all the other things that can be pretty frustrating if I let them get to me; the world that isn’t set up for people with disabilities; the people who don’t see you, or worse, that look at you and make assumptions about your mental capacity; who think you are less than; or who can’t fathom that you have thoughts, feelings, dreams, and desires — just like everyone else.

 

With this website, I am sharing the world as I experience it — through my paintings and my stories. It’s not always bright and cheery, but in all of it, there is beauty if you look for it.