Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?
My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality. But before I die, there's a few things I'd like to accomplish...this is my bucket list and my story.
SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!
Wednesday, April 25, 2012
Dear Ellen, I need your help...
Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing. If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature. I'm declaring Tuesday, May 1st, to be
"Ellen's Going To Love Me, But Not My Friends" Day.
I think Ellen is the perfect person to help me spread my message about SMA because she's compassionate, funny, and wants to meet inspirational people, which apparently some people think I am.
So here's what I need from you...
On Tuesday, May 1st, please contact Ellen for me as many times as you can and as often as possible. I'd loooooooooooooove you forever if you'll contact her numerous times throughout the day, but even if you only contact her once, I'll still love you! Also, keep in mind, while I want Ellen to be flooded with people sharing my story with her on Tuesday May 1st, you can start sharing my story with her immediately, if you haven't already been doing so.
CONTACT HER SHOW - Here's Ellen's webpage for "Do You Know An Inspiring Person". All you have to do is input your information, upload my photo (see below), tell Ellen my story (see below), and then click SEND.
In the TELL US YOUR STORY section you can...
WRITE YOUR OWN
COPY & PASTE FROM BELOW (ADD TO THIS IF YOU'D LIKE):
I'm writing about a 5-month old little girl named Avery who has an incurable disease called Spinal Muscular Atrophy (SMA). While SMA is the #1 genetic killer of infants & children under the age of 2, most people have never heard of it, there is no cure for it, and there's minimal clinical research being done to find a cure for it. Avery has created a "bucket list" of things she'd like to accomplish before she dies and one of those things is to be on your show to help spread awareness about SMA to protect future children and their parents/loved ones from SMA.
Since starting her blog 3 weeks ago, she already has over 500,000 page views, has been talked about in online news articles (including MSN, and she's been seen on FOX & CBS news stations throughout the country. Yet her #1 goal on her bucket list remains to be on your show so you can help her teach the world about SMA.
Will you please make time for Avery and help her achieve her #1 bucket list goal?
Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!