Originally published on Chelsea’s Blog.
When Baby Avery Lynn Canahuati was diagnosed with Spinal Muscular Atrophy (SMA) last month, her parents compiled a bucket list of goals for her to accomplish in her lifetime and launched averycan.blogspot.com, a blog that went viral online as soon as the first post was published:
Friday 04/06/12, around 3:30p, my mom & dad received a call from my neurologist and the SMA (Spinal Muscular Atrophy) test results came back positive. Meaning the worst case scenario has occurred and I have been diagnosed with SMA Type 1.
The posts were written by Avery’s father, Michael Canahuati, in her voice. With a touch of humor, the blog soon attracted millions of viewers worldwide. Among the activities that Baby Avery completed were “[get] my driver’s license;” “[be] on TV;” and “[have] a first crush.”
The blog’s opening lines are as follows:
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!
So, what exactly is SMA? The surprising results of a poll posted on the blog, revealed that 89% of participants were unaware of the disease prior to hearing Baby Avery’s story.
Spinal Muscular Atrophy (SMA) is an autosomal recessive neurodegenerative disease that affects the motor neurons (Anterior Horn Cells) in the brain stem and spinal cord, important cells responsible for relaying electrical and chemical messages from the brain to muscle cells (Fight SMA). When the signals are disrupted, the muscle cells fail to function properly and atrophy, producing symptoms dominated by muscle weakness. The disease does not affect the mind or cognitive skills; and there are generally no problems in terms of sensation in the face, arms, and legs. According to Baby Avery’s blog and Fight SMA, an organization dedicated to raising funds in support of SMA research, “Spinal Muscular Atrophy kills more babies than any other genetic disease.”
Children and adults with SMA are likely to have inherited the disorder through “autosomal recessive genetic transmission” – receiving one gene from both the mother and the father. If both parents carry the gene, there is a 25% chance that any one of their children will manifest the disease.
On her blog, Baby Avery explained that there “is currently no cure and it attacks the muscles which causes inefficiency of the major bodily organs – especially of the respiratory system – and eventually leads to death.”
Sadly, Baby Avery passed away on the afternoon of Monday, April 30, 2012 due to pulmonary complications. Her father attempted CPR but was only able to bring her back to life for a short while before she passed away in the hospital. Her death was described as a complete shock for family members, friends, and followers. In a blog post shortly thereafter, her father shared a farewell letter written in Baby Avery’s voice:
Dear Mommy & Daddy:
If you’re reading this it’s because I’ve gone to take care of my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents. I love you veeeeeeeeeery much…
When people think of me, I hope they’ll also think of all my friends who have been through this and who are going through this now. But what I really hope for is that when people think about me, they will not waste time sitting there feeling sorry for me, rather I hope they will STAND UP in honor of me and all of my friends (past, present, and future). And they can do so by spreading awareness and helping to fund a cure for my friends…
Avery, Aviator, Aves, Scuttlebutt
For more information about SMA and the efforts to find a cure, click here.
If you would like to visit and follow Baby Avery’s blog, click here.
If you would like to make a donation directly to Dr. Kaspar’s SMA Gene Therapy for advancements toward a cure, click here.