It is with great sadness that I am sharing the following information....
Avery Canahuati, the five- month-old girl with spinal muscular atrophy whose inspirational "bucket list" went viral online, died Monday of pulmonary complications from the disease.
So in my daily perusing of Yahoo I came across the Avery's Bucket List story and Blog. I was personally touched by this family's story. Avery was diagnosed with an incurable genetic disorder - Spinal Muscular Atrophy - and given a life span of 18 months.
As a parent I know first hand the pain of losing a child although the situation was different (spinal meningitis), I too remember coming to a point of deciding how was I going to meet this life challenge.
I am amazed and touched by the uplifting way they chose to share Avery's story and I hope you will find some smiles between the tears as well.
The biggest item on the Bucket List is to get on the Ellen Show and spread the word about SMA (Spinal Muscular Atrophy) so they are asking for help. I have copied the information below:
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.
TWITTER - send Ellen tweets about me.
FACEBOOK - send Ellen messages on Facebook.
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
OR
COPY & PASTE FROM BELOW (ADD TO THIS IF YOU'D LIKE):
Dear Ellen:
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?
Thank you!
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