A Huge Thank You to Sophia's Cure Foundation

Yesterday there was a blog sent out by an organization fighting, like all other SMA families, to find a cure for this disease. I've met this family, and they are very nice. They have a huge following in our SMA community. However, the blog they sent out was very negative.....and it upset me greatly. While I understand we all have our "down" days.........all this blog gave me was bad feelings. They talked about SMA being terminal........isn't LIFE terminal????? It made me realize that they don't BELIEVE, and it makes me sad for them and for their followers. And by the way........SMA doesn't HAVE to be "terminal."

I choose to BELIEVE in my Charleston and other beautiful kids with SMA. I KNOW there is a successful treatment for them, and I am consumed with raising money so it gets here in a hurry!!!!

So last night, I went to bed sad. Because if they don't believe in our kids (not to mention their own), why are they even in this fight?

AND THEN THIS MORNING HAPPENED!!!!!! At 6:05am, Vinny Gaynor (www.sophiascure.com) sent me a text......."Are you awake?"

Well, then I was!!!!! He said to check Sophia's Cure fan page on facebook. All I can say is, I haven't stopped crying HAPPY TEARS ever since.

http://www.sophiascure.org/blog/working-together-has-made-a-difference

A wonderful, generous, unbelievable, awesome, inspiring donor has just sent $400,000 to help us fight SMA!!!!!! This money is going directly to the Gene Therapy program at Ohio State University. That's the program that my family has signed up to raise $10,000 for  The 200 Commitments, which is a group of us all working towards a goal of raising $1,000,000 for this treatment for our kids.

Not only did we get a gift of $400,000.......but then Vinny also got a grant for another $100,000!!!!!!!! AND........we are all working on winning another $250,000 through a contest on facebook!!!! Here's that link.......PLEASE vote daily if you have a facebook page!!!!

Vivint Gives Back Project

I am amazed. I am happy. Thank you, Sophia's Cure Foundation..................

I BELIEVE.

I Believe in Charleston

Guess what. Charleston can drive. Yep! My little guy is amazing. Ashley arranged for him to trial a power chair. For those of you that don't know what that is, it's a wheelchair with a motor. Yep!!!! Betcha didn't know they had those for little 18 month old kiddos.....well, they do. And now that's our next challenge. Getting one for our Charleston. Because they cost as much as a real car. And not a cheap real car.

What a fight this is going to be. Let me tell you how it's started. In the SMA world, it is a fact that the earlier you can get a child into a power chair, the better it is for them. In the "normal" world, kids don't get put into power chairs until they're much older than 18 months. But for kids with SMA, their intellect is very high, and they are able to understand and figure out HOW to do things that they CAN do. And as we all know, they cannot do much. But drive a power chair???? Yep! They can do it.

Charleston's physical therapist decided he can't do it. She refused to even come watch him. REFUSED. Needless to say, she's history. So Ashley went to Charleston's occupational therapist. Guess what.......yep, she's the physical therapist's friend. She refused to come see him in it! .....she's history......So then guess what. Ashley went to Charleston's social worker. Guess what! Yep.......she's history. So then Ashley went to their BOSS. Well, I could go on and on.......let's just say that if you don't support and believe in our Charleston, YOU'RE HISTORY!!!!!

So then Ashley called Shriner's. Nope, they can't help. Shriner's can't help???? Are you kidding me???? So then she called the doctor that sees him at Shriner's. Guess what!!!! HE BELIEVES IN CHARLESTON!!!! So he's seeing what he can do. And then, one of Ashley's friends connected her with a physical therapist that has agreed to see him this Wednesday. YAY!!!!

We want this for our baby. This is the ONLY chance he has for any kind of independence. AND HE CAN DO IT!!! At 18 months! Imagine how good he'll get when he gets older and experienced with it. We have dreams of taking him places, and racing with him. We'll get there. Because we believe in Charleston.

Ready..........set...........race ya !!!!!!