Saturday, April 4, 2009

The Daily Dakin



Look at this boy- seriously, just look at how stinkin' sweet he is!! His name is Dakin and his mom is one of my followers (and I'm totally one of hers!). His amazing mom, Devon, got in touch with me about sharing his story to raise awareness for SMA- Spinal Muscular Atrophy. How could I not? Here is what she shared with me:
"He was born perfectly normal but at three months literally one day could no longer breathe. He was whisked to Dallas and given a tracheostomy and put on a ventilator, upon which he is dependent to breathe. Dakin is cognitively normal but unable to walk or crawl, as his weakened muscles do not allow him to do so. He will most likely be ventilator and wheelchair bound for the rest of his life.

SMARD is part of a family of diseases that also includes ‘regular’ Spinal Muscular Atrophy (SMA). SMA type one is the number one genetic killer of children under age 2. One in 40 people carry the gene that causes SMA. These sweet babies are not expected to live to see their 2nd birthday, and they spend much of their lives trapped in bodies that cannot move, though their minds are intact.

There is hope, though!! SMA was chosen by the National Institutes of Health as one of the neuromuscular diseases closest to treatment and cure. So to that end the Act is waiting to be reintroduced in the 111th Congress. This Act, which has bipartisan support, will allocate already existing funds from the National Institutes of Health’s budget towards unifying SMA treatment studies and moving them towards a cure. To garner support for the Act, Bill and Victoria Strong, whose sweet daughter Gwendolyn has SMA type one, started the petition. There are already 50,000 signatures, and we are aiming for 100,000."
I have to admit-it sounds weird but I sometimes have a hard time going to Dakin's blog The Daily Dakin because I usually get very teary eyed when I do. I can only imagine what it would be like to be Dakin living with his condition. I especially can't begin to think about Devon and her strength that she has everyday. I especially admire Devon for using Dakin's situation to help build awareness for such an important cause.
On my sidebar is a button where you can click to sign the petition, or just click here. I did it and it took no time at all. If you have time you can also visit The Daily Dakin to show your support and grab a button of your own. We as bloggers can have fun entering giveaways and sharing money saving tips- so why not use our special blogging powers and support SMA?

5 comments:

  1. That smile is positively angelic!!!!!! I did not know of this disease. You have a very informative and inspiring blog Ashley. and prayers to Dakin.

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  2. Ashley, thank you so much. I can't say how much this means to me--you are so amazing!! Thank you thank you thank you!!!!

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  3. I, too, am a follower of little Dakin! I saw your comment on her post and had to come check out yours. What a fabulous thing you have done in helping spread the word! Awesome!

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  4. Signed it! Thanks for making others aware!

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Thanks for your comment- keep 'em coming!

 
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