A is for Avery - 5 m.o. SMA Victim
Posted in A to Z Challenge, Avery, disease, Family, life, loss, love, Personal Reflections, SMA
Happy May Day!
Well, I signed up to do the A to Z *APRIL* Blog Challenge...but other obligations kept me from having time to blog.
SO...I'm unofficially doing my own A to Z *MAY* Blog Challenge - writing one post a day representing each letter of the alphabet.
For today, May 1st, my choice for letter "A" is a sad one, in memory of a precious little one who lost her battle to a debilitating disease yesterday (4/30), 11 days before she turned 5 months old. Today, it's A is for Avery!
Avery was diagnosed with a rare disease called Spinal Muscular Atrophy (SMA). This is the description of SMA from the Families of SMA.org site: “Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common ‘rare disorder’: approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.
SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body – i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable.”
I have such a heavy heart for these parents of little Avery Lynn Canahuati. The doctors suggested she might live to be 18 months old - sadly, her little lung collapsed yesterday, which sent her into cardiac arrest. I just blogged about her on Sunday, 4/29, and about her father's valiant effort to blog about Avery's Bucket List from Avery's perspective.
In addition to sending prayers and thoughts for comfort and strength to Avery's parents and other family and friends, please visit Avery's Bucket List blog to find out how you may send donations toward ongoing research in Avery's name to find a cure for SMA.
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| "SMA never took Avery's smile away!" |






