I am so very grateful that we live so specifically at a moment in time where, instead of the world just writing off our son is a lost cause, we can pinpoint the specific genetic cause and have a strong shot through therapy to radically improve his life.
Happy Thanksgiving, all!
As it's Thanksgiving in the US, I want to talk a little bit about my son. At the beginning of this month, we got genetic testing results that shows that my son has an extremely rare genetic mutation known as SYNGAP1.
(Don't worry, this is a hopeful π§΅, 1/9)
We're actually looking to get our sun entered into a clinical trial for the most promising of the gene therapy treatment options next year. We now have more hope than ever before that he may be able to truly experience his childhood.
(8/9)
Holy shit, this place has gotten, like, ten times worse since Tuesday. It's like a peacock parade of the most annoying and disgusting members of the population.
I was really hoping to keep posting here, but it genuinely might be a lost cause.
@el_chaveezy Yeah, and I still don't want to delete my account, because I have such history here. I just want it to be the hellsite of four years ago, not...this.
Having taken a full day to let the election results sink in, I just want to be more helpful and compassionate to those most vulnerable in our current, and especially upcoming, society.
Because of...*gestures broadly*... I wanted to remind everyone to follow me on the BS site. Most things I'll be posting here will also be there, as well as some exclusive posts. I'm thinking I may be more willing to open up about older projects over there, wink-wink.