Thursday, July 28, 2016

Where I've Been: The Good, The Bad & The Fantastic

Some people have noticed there's been no activity here on Star Struck Luck. Well, I'm here now...sort of. The past few months have been an emotional rollercoaster for me and I haven't been capable of sharing or participating in anything. I'm still trying to wrap my head around everything in order to properly explain without writing a novel. So here goes. 

In February, my beloved cat Louie passed away. Before we rescued him, he had a gunshot wound to the head. Although he was extremely healthy, we think the bullet moved. We rushed him to the vet but his seizures were uncontrollable. Despite their hours of efforts, he still didn't make it. My heart was so broken that I overly neglected myself. I was broken. 

Since my immune system failed me, I caught the flu, which is practically a death sentence for people with my disease. Spinal Muscular Atrophy doesn't react well to any kind of virus. As this wasn't our first rodeo, we were fully prepared this time. My living room looked like a hospital with all our fighting equipment, which ultimately worked. I beat it without going to the hospital! It did take me 2 months to fully recover but it wasn't boring. Oh yes, I totally binge watched my Netflix. 

 During this time, we did welcome a new member to the family...Prince Ozzy. Funny thing is, we didn't exactly adopt him on purpose. Around Christmas, this adorable kitty just walked right in like he owned the place. Oddly, he was immediately accepted by the other cats. I have to wonder if they recruited him themselves. I did however, find his owners through They took him home but brought him back shortly after due to allergies. This lucky boy is loved by 2 families. I think he's already comfortable with his living situation.

After all of this, my wheelchair broke down. I swear I'm not writing a country song but I totally could, right? Anyways, we finally got it fixed after 3 weeks of pain and discomfort. I'm in the process of getting a new wheelchair as well. It's been 3 years of building and we're so close to being done. I know I know, I said that 2 years ago. GAH! I keep telling myself it'll be worth the wait. 

So I bet you're waiting for the fantastic part, right? Well it's about a successful clinical trial buzzing around the SMA world. I'll copy and paste the cool part. 

"AVXS-101 is a proprietary gene therapy candidate of a one-time treatment for SMA Type 1 and is the only clinical-stage gene therapy in development for SMA. AVXS-101 is designed to address the monogenetic root cause of SMA and prevent further muscle degeneration by addressing the defective and/or loss of the primary SMN gene. AVXS-101 also targets motor neurons providing rapid onset of effect, and crosses the blood brain barrier allowing an IV dosing route and effective targeting of both central and systemic features." 

Crazy right? This might mean we're closer to a cure! Hopefully of coarse, but I'll be keeping everyone updated on whatever journey I go on. So where does this leave my blog for now? I have no idea. I'm trying to come back full force, but I keep getting sidetracked. Right now, I'm focusing on my health, my future, my family and my fur babies. I'll be posting more often though and definitely keeping my Twitter Party and Instant Win lists updated, so please enjoy.