Loving Charleston: 2011-07-10

Charleston listening to daddy on the phone.

It's all about him. This little 19 month old baby boy. My grandson. Charleston. THE love of my life. This baby???? Man, he pulls at my heart strings. I'd give my life for him.

Charleston & nana having fun!

AMAZING things have been happening. God's showing up when I've been questioning where He is.

Charleston trying to figure out what this is!

Miracle #1: Charleston is able to spend TONS of time without his bipap (it helps him breathe) because he's been at sea level. He speaks louder now. We don't need the microphone anymore!!!! He's stronger and funnier and happier because he can BREATHE!!!! Spending time at sea level has made such a huge difference for him, instead of being at a high elevation.

Checking things out.

Miracle #2: Charleston needs a power chair. I've written before about the battle that Ashley has been experiencing in trying to get him one. About 2 weeks ago, my friend Elisa went to shop at Target. She noticed a little girl in a power chair with her mom. She decided to go speak with them, asking about the chair. After talking with them for a few minutes, the mom asked about Charleston's diagnosis. When Elisa told her that it's SMA, the mom said that her daughter also has SMA. Jane, the little girl, got the chair when she was 2 years old, and now she's 8!!!! She is receiving a new power chair because she has outgrown the current one........and CHARLESTON GETS HER POWER CHAIR!!!!! Oh my gosh, have we been doing the happy dance all over town!!!! We cannot believe the generosity of Jane's mom, Kelly. Not only are they giving him the chair, but I brought Ashley and Charleston over to their home, and everyone hit it off. Now Ashley FINALLY has met another mama and child with SMA in person, who "gets it." Kelly has been walking this journey for 8 years.

Little mama and her precious boy.

Miracle #3: There was supposed to be a Golf Tournament Fundraiser for our little man in June, but it was cancelled because they started it way too late. In the meantime, BJ (my son) & I had decided to try to have one in the Bay Area, where we are all originally from. We couldn't find anywhere to have it that didn't charge a fortune, when we heard from our old neighbors (Kathy & Steve Bergstad) who offered to let us have it at their restaurant in Danville, The Great Impasta. Not only are they letting us have it there, but they are only charging us their cost so we can make sure this is a success!!! They are WONDERFUL, AMAZING, GENEROUS, LOVING friends of my family, and want to help. We have been receiving unbelievable donations from businesses and individuals that don't even know us, along with some amazing donations from some generous friends. The fundraiser is this Saturday, and I will let you know the outcome!!!!

The shirts we'll be selling at the fundraiser.

Miracle #4: Last year, the volunteer fire departments in the Reno area held a spaghetti feed fundraiser for Charleston. This year they're doing it again!!!!! And they have set a goal of raising $30,000 for our little boy!!!! On top of raising money for Charleston himself, they understand the importance of funding a treatment for kids with SMA.....gene therapy. There is a foundation that we have signed up to raise $10,000 for, Sophia's Cure, to help fund the Ohio State University Gene Therapy Program for SMA. Collectively, SMA families need to raise $1,000,000 this YEAR in order to get the program to the 1st clinical trial level at the FDA. WE ARE DETERMINED!!!! So the fire departments have set up an additional way to raise that money, which won't affect the fundraising for Charleston himself. They are selling luminaries that will be lit at sunset in honor of Charleston or any other child with SMA. How amazing is that????? (If you'd like to sponsor Charleston in that luminary walk, you can just click on the link to Sophia's Cure above. The cost is $10.00.)

Daddy took this picture of them sleeping. Notice where his hand is :)

Miracle #5: When my kids were 3 & 6, I became a single parent. We were blessed with finding a wonderful young lady, Stella, who came to live with our family from Germany. We have been friends ever since, and she is now a successful clothing designer in Berkeley, as well as a wife and mother. Stella held a fundraising event at her boutique, and raised a bunch of money for Charleston!!!! Thank you thank you thank you Stella! We love you!!!

Stella and I at her fundraiser for baby boy.

Miracle #6: And the most important miracle of all --- Charleston is GREAT!!!! He is thriving, healthy, and happy. Because the weather has been good, we are getting him out for "field trips" and introducing him to the outside world. HE LOVES IT!!! Some of our trips have been to the park, to an outdoor shopping area to feed the ducks and go on a kiddie ride, a book store, Target, and the Oakland Marina. It's so much fun to see him take it all in, and it's amazing to be able to share these experiences with him. TAKE THAT DOCTORS!!!!