Transcendental Waves

05/29/2024

Until we decide we can’t watch others children go hungry, the world will starve for love. We have the ability and technology to feed and house the world. Heaven is ours to create!

04/12/2024

Generational curse breaking isn’t about blaming those before you. It’s about changing the systems that taught them. It’s about being the change you know the world needs.

04/11/2024

We are building a moon train and the US gov is contracting one of the biggest weapons manufacturers to do it.
All In a country that can’t provide healthcare. All in a country that has terrible public transit in big cities. We are paying for this project while inflation is going through the roof. We are paying for this project as we watch our gas prices shoot up. We are paying for this at the same time we pay to find wars all across the globe. This is our gov showing us once again we don’t matter.
Do you believe that you benefit from these types of projects?

04/10/2024

Stop seeing the end of the world and see the beginning of a new one.

03/29/2024

Isaiah 45:7 claims god created good and evil. What do you think about this? Why would an all loving god create evil?

03/07/2024

02/08/2024

Old stoner

02/08/2024

The past few weeks have been incredibly difficult for me. It's hard to express the overwhelming pain of watching your child fight for their life. It's a feeling that leaves me feeling helpless. Our hospital follow-up last Friday was just like all the others, with the same probing questions that I assume are meant to evaluate my mental state, because who could possibly remain unaffected while living in a perpetual state of life or death? "How do you do it, mom?" "How do you navigate through these dark days?" I despise that question. The truth is, you just do it. There's no option to curl up and hide. How do I do it? I don't have a definitive answer. Perhaps, guided by her radiance, powered by love, and fueled by hope. Savannah is a sweet little ray of sunshine, always smiling no matter what she's going through. It's the unwavering love for her that propels me forward. And although I may feel helpless at times, I remain hopeful that one day, there will be a treatment for her.

My prayers and hopes are firmly fixed on the possibility of that day arriving.

I got an email last night that honestly couldn't have come at a better time. As I've mentioned, I've been feeling pretty helpless lately, always feeling like I'm not doing enough to find an effective treatment for Savannah. Well, one of the companies I applied to a few months ago, which focuses on developing ASO therapies for nana rare diseases, reached out. At first, they didn't think an ASO could fix Savannah's mutation, but they've been looking into every possible approach. While it's not a definitive answer, they have come up with an allele-selective ASO to specifically target the mutation in Savannah's SMC1A gene, focusing on a shorter gene transcript version. They've already sent this proposed sequence to several researchers to see if it could result in a functional protein or at least a sufficiently functional protein that would result in a clinical benefit.

I know this is all pretty complex and hard to grasp. Savannah's disease is due to a mutation in her SMC1A gene, causing the protein it produces to stop prematurely, rendering it nonfunctional. The ASO would be designed to bind to the mutated area, resulting in a functional protein. We've set up a meeting with them on Feb 2nd to discuss the possibilities further.

So far, this has only been done for 15 individuals worldwide! It's not a definitive answer, but there's a very real possibility that my sweet girl may receive a personalized treatment tailored to the root cause of her disease!

Please keep Savannah in your prayers for positive news on February 2nd 💜