Spinal Muscular Atrophy - Avery Lynn Canahuati

I did not know what Spinal Muscular Atrophy (SMA) was until about three weeks ago when a friend on facebook posted a blog about a very pretty baby girl named Avery. She was born on 11/11/11. Her parents just discovered that their baby girl had SMA. There was no genetic testing done on her mother when she was pregnant, so they never knew that she would be born with this incurable genetic disease.

It is the #1 genetic killer in babies, yet testing isn't mandatory! Some doctors offer it and some don't even mention it. Fortunately my doctor is one that tests for it and urges you to contact your insurance company to verify that they will pay for it. I remember her giving me a pamphlet on SMA, but I did not take the time to read it. I just thought that it was just another test that had to be done, so I disregarded the information. I called my insurance and luckily they covered all of it. That was the last time I remembered seeing the words "Spinal Muscular Atrophy" until I read Avery's blog.

Her parents decided to take a positive approach after learning about her disease because they wanted to spend every moment they had with her making memories since they knew she would not live a long life. The life expectancy for a baby born with SMA is newborn to 18 months. They decided to make a "Bucket List" for Avery and try to fit in everything that they knew she would most likely miss out on in life - from tea parties to getting her license to visiting a college. Her blog has had millions of views in just about 3 weeks! She has been on local and national news stations and also on local radio stations. These parents are very determined to spread the word about SMA since so many medical professionals are not. Her #1 "Bucket List" wish was to be on the Ellen Show (you know, the talk show host!) to help spread awareness about SMA to protect future children and their parents/loved ones from SMA.

Sadly and very unexpectedly, Avery passed away on Monday, April 30 at just 5.5 months old. Her parents still have one wish - to spread awareness about SMA and raise funds for SMA research. There is currently only one doctor doing clinical research on gene therapy for babies with SMA, but there is not enough funding available. An anonymous donor has agreed to match every dollar donated up to $500,000 to help bring Dr. Kaspar's SMA Gene Therapy program out of the lab and into Avery's SMA friends.  Dr. Kaspar's SMA Gene Therapy could cure Avery's friends or at the very least offer advancements towards a cure for them.

Avery's Blog is full of important facts about SMA. Please go and visit it to see what her incredible parents are doing for her and all other babies with SMA!

To donate to Dr. Kaspar's SMA Gene Therapy, go to the Sophia's Cure website. It is a non-profit organization, so all donations are tax-deductible.

Through it all, her Daddy's #1 wish was for SMA to never take Avery's smile away, and it didn't!