Avery’s Bucket List: Raising awareness for Spinal Muscular Atrophy

Originally posted on Apr 28, 2012 with an update below.

A touching story about a five-month-old’s diagnosis of an incurable disease has taken the internet by storm.

Get to the point

  • Laura and Mike Canahuati created a blog written from the perspective of their daughter, Avery Canahuati.
  • Avery was diagnosed with an incurable disease and has been given 18 months to live.
  • She (with her parents help) has set up a bucket list of things she wants to experience before her time runs out.  Some things include:
  1. Go swimming
  2. Attend a birthday party
  3. Attend a sleepover
  4. and much more
  • One of the goals of the blog is to raise awareness of the disease which Avery has been diagnosed with, Spinal Muscular Atrophy (SMA).  So our next few facts will be to help educate you on this disease.
  • SMA is a genetic neuromuscular disease that is the leading genetic cause of death in toddlers and infants.
  • About one in 6,000 are born with the disease.
  • Their are two forms of the disease.  Type I, also known as Werdnig-Hoffmann Disease, is usually diagnosed before six months of age and typically results in death before the age of two.
  • Symptoms of SMA include loss of muscle control, loss of movement, and increasing weakness.
  • People with SMA progressively lose the ability to walk, stand, sit, and eventually move.

 

Update

May 1, 2012

It is with a great sadness that we report that Avery was unable to complete her bucket list as she passed away on April 30. According to her father, Avery died due to pulmonary complications related to SMA. May Avery's spirit and her ability to raise awareness of SMA live on.

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How is this today's RAGE?

At the time of writing this article, "spinal muscular atrophy" was one of the top trending terms in google search. Looks like the goal of spreading SMA awareness is working for Avery's parents.

Share the RAGE

Source for point 1-4
Avery's Bucket List
Source for point 5-9
SMA Foundation | Home

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