RIP Avery

2 May

I recently read an article about a baby in Texas, Avery, born with SMA, or Spinal Muscular Atrophy. I had never heard of this disease either, but it is disease of the spinal cord and brain stem that kills more babies than any other genetic disease.

from Avery's Bucket List

Shortly after her birth Avery was only given a few months to live, so her parents decided to create Avery’s Bucket List for her, to accomplish some big moments in a person’s life before she lost hers. They fed her hard foods like cupcakes and lollipops, got her a drivers license,  even got her a first kiss, on the cheek by a little boy also with SMA.

Just about a week after first hearing about Avery I have learned that she’s passed away after going into cardiac arrest unexpectedly on April 30. Born on 11-11-11, she was only 5 and a half months old.

from Avery's Bucket List

There aren’t really words to describe how special the Canahuati family is. In the face of such pain they put their grief aside to provide everything they could for their little girl. I honestly don’t know if, when faced with such a painful situation, I wouldn’t just spend all day in bed crying. Her parents are two very, very strong people that pushed everything to the side when their daughter needed them. They were destined to be a family, because Avery needed two people as remarkable as her two parents to keep smiling.

I decided to donate to her organization, mainly because I was really touched by the family and their dedication to their adorable little girl, but also because every dollar donated will be matched to meet a $1,000,000 goal to launch an SMA Gene Therapy program.

I was amazed that a disease so deadly and so popular was foreign to me, and I’m lucky to have had the chance to read Avery’s story, even if for a short time, and learn more about this disease. What I am really grateful of, however, is the chance to have read about Avery and her family. They really set an example for me, and I admire them for that.

Click here to donate if you have the means, and no matter what, take today and try and live it a little bit more, for people like Avery who lived theirs to the fullest.

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