As Nana Turns 65.......

....I face the "elderly" life with tons of hope and joy....

....I believe in hope....because really, what is life without it?

...I'm thankful that my Charleston has a Mama Bear...

....I absolutely love that we live in a world where things can be adapted for him to enjoy life...

....I'm happy that he's able to teach people things from his life....

....It makes my heart happy that he can go into his backyard like any other kid....

....SO freaking thankful that I finally was able to touch him last month....

....I was thrilled to be able to be silly with my daughter after a year of "hibernation"!!!

...the LOVE between these two boys is immense....how lucky are they to have each other?????

Fireman Charleston!!!

Just call him Chief Charleston!!!

Charleston had a visit from Santa Claus, and LOOK WHAT SANTA BROUGHT HIM!!!!! Yes, he brought him his own FIRE TRUCK!!!! And he brought little brother Cole (2 years old) his own ATV!

Charleston continues to reap benefits from the treatment he's getting, Spinraza. So Santa knew that he could drive his own fire truck! Santa dropped by Daddy's fire station, just to make sure that everything would be set up correctly & customized for our Charleston.

SO EXCITING!!!! Santa knew just what to get him!

Here you can see how Daddy helped Santa. Together, they attached a sled so he could lay flat on it.

Posing in front of the Christmas tree, anxiously awaiting Santa's visit.

LOOK!!!! Charleston is giving his little brother, Cole, a ride in his fire truck!!!! That's what big brothers are supposed to be able to do, right???!!!!

NOW, for the best part!!!!

Miracle League truly is a miracle!

HE PLAYS BASEBALL!!!!

Charleston has been playing baseball with Miracle League. It's an organization that makes it possible for kids like him to be "normal." He's a great player. Daddy (Cameron) assists him by helping him swing the bat......and at the last game, he got a home run!!!!

If any of you want to experience a wonderful, heartwarming thing........find a Miracle Field near you. Or better yet, volunteer! It truly is amazing.

Here are some pictures from his 1st season.

His two biggest fans (besides mom & dad):

Nana

Little Brother Cole

His name is Cole, and he has the BEST big brother on the planet!!!!!

My Charleston is a BIG BROTHER!!! And let me tell you, he takes it very seriously. He is crazy about baby Cole. Here is a picture of the first time he met him (at the hospital).

Cole is a VERY happy little boy. Who wouldn't be with the big brother he's been blessed with? 

Happy Birthday, Baby Boy

Two years ago today, I woke up early and headed for Tahoe Forest Hospital, knowing that I was going to meet my grandson for the first time. Two years ago today, I fell in love with a little boy named Charleston.

Today, I am thankful...

• for the people that have helped us on our journey
• for the doctors who are spending their lives trying to find a cure
• for our friends that have attended and sponsored fundraisers so that we are able to get the things we need for this precious baby
• for the strangers that have learned about Charleston, and truly care about him
• for the other SMA families that share our journey in their own homes
• for the State of California, and the wonderful benefits they provide
• for God choosing us to love an angel on earth
• for Ashley & Cameron both being in the medical field
• for Charleston's sense of humor
• for Mickey Mouse & Barney....and balloons
• for my daughter's devotion to him
• for my son holding me up when I need it

When I dreamed about being a nana, I never thought it would be this good. Today we celebrate my Charleston's 2nd birthday. He is in the 10% of children born with SMA that survive until they are two. WE MADE IT. 

I am in love with a little boy named Charleston. Happy birthday, baby boy.

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 !!!!!!