Friday, February 6, 2009

Please use the Button to your Right.......

.... I have been blessed to know Dakin and his Mom, Devon. We share a common thread... Both of our son's were born in October 2007. We met on a popular website for expectant mothers, new moms and not-so-new moms. We called our Board the 2007 Pumpkin Patch!

Long story short, a little over a year ago, when Dakin was but a few months old, Devin was devistated to learn that her little boy was born with a highly rare muscle disorder and he almost died. By the grace of God, Dakin was in the right place at the right time and got the help that he needed right when he needed it.

His mom is an unsung hero to me and I was honored to help her make his first birthday special. She had been calling him her little Superman but all the costumes were too hot for his little body. She came to the board to ask for ideas on what to do. I offered to make the costume. I wanted to do it for no cost, but of course, Devin, had other plans!

Another name that she called Dakin, before the SMARD, was Fishcracker, and that is where I got the name FishCracker Wearables for my costume line!

Back to the button to the right...... Please click on it and take just 5 seconds to sign the petition! It is for a bill in congress will help find a treatment and cure for SMA--it's really close to both. It won't cure what Dakin has, but it might help researchers (what few there are..,boo) understand his disease a little better and help him in some way!*

If I ever get a chance to make it to Texas, there is one little boy (and his mom) that I can't wait to give a great big hug to!!

* Edited to correct a mistake that I made.

4 comments:

Devon said...

Christie, you are too adorable. Thank you so much for posting about this. You have always been so nice to me and supportive, and I count you a dear friend.

The write-up was perfect--the only thing is that the bill in congress will help find a treatment and cure for SMA--it's really close to both. It won't cure what Dakin has, but it might help researchers (what few there are..,boo) understand his disease a little better and help him in some way.

I LOVE YOU! And I'm sending those pictures today!!

Angie Lynn said...

Awwww... what a doll! I signed!

Phoenix's Mom said...

Thank you for sharing his story! He is amazing!
Angela

QuirkyDolls said...

I signed too. I am a nurse of a sma patient who is now 6 years old- it's a very tough life.