"I just want to ride bikes with you" -

Our most important goal since Charleston was diagnosed is to make sure he LIVES LIFE!!!!! I, as his nana, have been frustrated over enabling him to have a simple joy - riding a bike.

I just recently told Ashley that every Christmas, I donate a children's bike in his honor. It's something that has been important to me, and has filled a small hole in my heart because he hasn't been able to ride a bike of his own.

Now look!!!!!! Charleston has a bike!!!!! And little mama took him for a ride yesterday in their neighborhood!!!! And he LOVED IT!!!!

I found this bike by searching on the internet. Periodically, I've searched bikes for disabled children, to no avail. But a few months ago, something showed up on indiegogo.com - here's the link for any of you that may be interested: Taga Bikes. Ashley contacted the people at the company, and they were fabulous to work with!!!! They made modifications for Charleston, and the bike was delivered last week.

My Charleston is happy, little mama is happy, dada is happy, and this nana is OVER THE MOON!!!!

HOPE. For REALS!!!!!!

Seven years and twenty-three days. "Take him home and love him, there's nothing you can do." "No treatment or cure." For 7 years and 23 days. He's a fighter. Mom and Dad are fighters for him. Our entire family has fought for him. But that's what we've been told, for 7 years and 23 days.

On December 23rd, 2016, my Charleston turned 7 years and 23 days old. TAKE THAT SMA!!!!!

My phone rang at 1:40pm. I was at the Oakland Airport, picking my mom up for Christmas. I knew what it meant, but my mom didn't. I started crying, but this time........with tears of joy. Of HOPE. Of EXCITEMENT. Of THANKFULNESS. I knew what her phone call was about, and it was incredible news that we had hoped and prayed for.

It was Ashley..........."We got it, BABY!!!!" And, for the first time in 7 years and 23 days, her voice was full of JOY.

Yes, we got it, baby!!!!!!! The FDA had just made an announcement --- they released the very first pharmaceutical treatment for SMA!!!!!!!

http://www.curesma.org/news/spinraza-approved.html

This is a drug that has been in the works for years. It is NOT a cure. It is a treatment. So what does this mean for my Charleston?

We don't know. What we do know is this:

The clinical trials have only been performed on babies with Type 1. Has it helped? TREMENDOUSLY!!!! Some of them are walking.

What will it do for Charleston? We don't know, but we are hopeful.

How does it work? Here is a really good, short video that explains it:

http://www.sandiegouniontribune.com/business/biotech/92202909-132.html

So now we wait. AGAIN! Little mama has been busy contacting hospitals, doctors, the pharmaceutical company, the distributor of the drug, CCS, and anybody else that will listen!!!!
We are now awaiting insurance approval. The cost is $125,000.00 per injection. Yes - $125,000.00 for every single shot.

What does it involve?

Charleston has to remain healthy (NO VISITORS)

It will be given to him as a lumbar puncture (in the spine), at a hospital. He'll have 4 shots in the first 45 days, then another one every 4 months. Each one will build on the previous one. We have been told not to expect to see any changes for a year.

Please pray for Charleston. Please pray for Ashley and Cameron, and baby Cole. Please pray for all of us.....for strength, for guidance, and for peace with this decision. Please pray for the families that have lost their warriors to this disease too soon. And please thank God for allowing us to keep this angel on earth.