Allegra, Age 20, SMA type 2

Hello, my name is Allegra Keys and I have Spinal Muscular Atrophy type II. For those of you reading this blog I’m sure you know what that is by now. I’m a really weak type II so over the years I’ve lost everything from my smile, the ability to swallow (been g-tube dependent since I was 2), and the use of my arms. I have nurses on the on weekdays 7am-6PM, I sleep hooked up to my bipap and food at night, I’m orally suctioned several times throughout the day, and I have the limited use of my right hand to drive my chair, operate my iPhone, and use my computer. It may not be much but considering I’m 20 and the prognosis was 2 I’d say I’m doing pretty good.

I was born in 1992 and at first everyone thought I was a normal baby. But I never rolled, crawled, walked, or tried to bare any weight on my legs. The doctors kept telling my mother that I was just lazy. Finally on my first birthday I was diagnosed with SMA. Not much was known about the disease then and my mom didn’t have the internet to do research. They tried to convince her to trach me but she wanted me to make that decision and to this day I’m still trach free. She started up the families of sma support group for Washington and ran it completely by herself for 7 years. During that time she got all her information from the quarterly fsma magazines and conferences. She forced the doctors to put in a feeding tube because I was malnourished (when I was eating it took so much energy that I was burning off all calories). After I had come off life-support successfully several times when the doctors said I wouldn’t she looked up non-invasive venting as was recommended by Dr. Bach back east. She had to fight with doctors over here to put me on a bipap because at the time they weren’t using them on kids my age and as far as we know I was the youngest person in the state of Washington to be sent home on a bipap.

To say that I absolutely love everything about my life would be lying, like most people I have my ups and downs. When I’m feeling down though I remind myself of all the people I have know who have lost their battle with this disease and I am blessed to be here. I remind myself that here, in Seattle, I have my mom and my younger sister plus my few great friends to support me. It may not be everything I wanted but it’s enough.
I made it through K-12 with about 4 major hospitalizations. And with my IEP I didn’t have to be in special ed. Luckily I was able to always keep my grades up. All throughout high school I was in the drama club, I was a journalist for the high school newspaper, and I was a part of the Black Student Union. I went to a few of my dances including senior prom even though I went alone. I graduated high school in 2010 with honors and was accepted to every college I applied to. I decided to go to UW Seattle. We couldn’t figure out how to arrange 24 hour caregivers so I stayed living at home. I soon discovered that UW was not the school for me. I just never felt welcomed because not one person ever looked at me or tried to talk to me. Long story short I was stressed out and making myself sick trying to do something I was not enjoying. I did that for a year and ever since then I’ve been doing online school for freelance writing. My goal is to become an international bestselling author one day. I know that’s ambitious but Stephen Hawkings isn’t the only person with a disability that can be someone big. The world needs to know that despite common misconceptions not everyone with a disability is is sitting in their homes waiting to die.

I try to just do things that I enjoy now. Life is too short (for anyone) to be stuck doing things you hate. I read, write, go to movies, hang out with friends and travel. Traveling is my main passion. It’s a little more difficult when you’re in a wheelchair but it’s worth it. It is something I plan on doing as long as I’m healthy enough to do it. My sister and I are actually going to Miami and Puerto Rico by ourselves at the beginning of September.

"Embrace The Suck"

Well that’s my story. Feel free to add me on facebook https://www.facebook.com/allegrakeys
To donate to help end Spinal Muscular Atrophy, please go to www.sophiascure.org/donate