Friday, April 27, 2012

A New Blog - Pray That It Keeps On Going

I just stumbled upon a fairly new blog and want to share it with all of you as it will tug at your heartstrings and also give you pause if you're of child-bearing age.

Many of you know that I have two beautiful nieces who were born with Spinal Muscular Atrophy or SMA as it's called.  It's a genetic disease where the muscles eventually lose all tone and because the heart is a muscle and the lungs are powered by muscle, death  is the result.

The new blog I found is that of a baby named Avery who has been diagnosed with SMA and is chronicling her bucket list as she has been given only 18 months to live. 

Please go take a look at the blog and be aware that many of you carry this horrible gene and may not even be aware of it.

I'm sorry if this sounds choppy and disjointed and I'm sorry if you were expecting something about art.  Just please take a look and say a prayer for Avery and her parents.


Teresa said...

Hi Jan,

Went to Avery's blog. Touching, inspiring and heartbreaking. Thanks for sharing. Avery has some very special people in her life.

sue said...

How very sad. I hope Avery's Blog will help to raise awareness - I'd never heard of this condition before and so sorry to hear your nieces have it.

Jan/ said...

Thank you both. Our family is very fortunate that my great nieces have lived much longer than expected - both are in their teens now. That's not to say that it's been easy for anyone in the immediate family. Both are in wheelchairs and the youngest has had to have at least two surgeries to insert rods in her spine as she lacks the wherewithal to hold herself erect. As I said, it's a horrible disease and I'm so glad Avery's blog is raising awareness.

Doreen Cross said...

I have never heard of SMA. I visited Avery's blog and yes it is heart breaking. I feel for such a young child and for her parents. So sad.