Showing posts with label SMA. Show all posts
Showing posts with label SMA. Show all posts
Wednesday, November 18, 2009
Help Us To Help Dakin!
I am sure that you have seen the widget on the side of my blog before, it's a little guy that I was blessed to have met his mom on a birth board back in 2007. He's just a few weeks younger than my youngest child and when Dakin was just three months old, he almost died. While he doesn't have SMA, he has a variation of it called SMARD, all research for SMA WILL benefit him and other children like him.
I was fortunate enough to make a cute Superman costume for him to wear on HIS first birthday and he just celebrated his second one, but he is one of the "lucky" ones. Many children with this "rare" disease don't even make it to their first birthday.
Please take a moment and sign the petition for Dakin and all of his SMA friends. As far as I am concerned, it could be my son with the disease.
www.PetitionToCureSMA.com
Thank you for signing today!
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.
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.
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