Fuck you world: My recent update on gofundme.com/helpDavidNoah

This is my recent update I just wrote on GoFundMe.com/helpDavidNoah

Sometimes, I just want to say Fuck You to the world.

Fuck you the doctors who don’t get it (or they’re too chicken shit to step up and help), fuck you strangers, fuck you my family, fuck you my ‘friends’, just FUCK YOU.

Of course, what I really should be saying, is *thank you* to the small and very important people who do understand–friends, doctors, and most importantly, my son’s godfather, who I would have long ago been dead without him…he suffered from polio as a young child, so he understands real human (medical) suffering perhaps better than anyone I’ve ever known…I think that’s why his Hollywood friends don’t understand what he sees in me, and he probably sees part of himself–someone who is bright, someone who wants to be anywhere but in a fucking hospital or doctors office, someone who is ambitious and will make something of herself if she can get rid of these shackles.

I’ve never thought about this consciously before, but that’s why we share an unspoken language…I’ve never had to justify or explain what I’m going through to him. He just knows. He knows id give anything to be better if I could, that this isn’t some game for his attention (or his money). This is real high stakes misery going on, and he knows I’d have no where else to go without him.

But…some days…

I just want to say FUCK YOU WORLD. FUCK YOU.

I know it doesn’t do any good, but it fucking makes me feel a little better 😜😍💋❤️.


Since raising money for a ‘Rare Genetic Disorder’ from strangers is seeming like an impossible task, what I’ve decided to do is I’m going to take the money I’ve raised so far and get some gene kits from the company ’23 and Me’.

While they are not top of the line research grade testing, their recent press release regarding their discovery of genes related to depression, tells me that the company is very committed to studying the human genome to help fund solutions for human diseases…that the company is trying, and they’re acting looking to expand their network of people who submit their DNA, to learn as much as they can–

This is important, because there are so many genes (billions?)–part of the process of finding a rare mutation is figuring out who has what…if millions of people have a mutation and don’t have a disease, then clearly that mutation isn’t causing our problem…

David Noah and I need to find the mutation that clearly very few people have that’s causing our problems…it might even end up being a few bad genes together causing this nightmare, but whether it’s a single gene or a combination of genes, in the end it’s going to be something most people don’t have.

I’m **so** moved by the people who have helped, and in some ways I’m not surprised the majority of people who have stepped up to help are the people who knew me back in high school…for better or for worse, people who knew me back when we were kids, know I’m the kind of person who doesn’t bull****–even if someone didn’t like me, they knew I told it as it saw it, so if I’m in gofundme begging for help, there has to be a very valid reason for that…

Maybe I should be posting more medical diagnosis to help strangers understand, but the bulk of the major problems so far have been with me, and I didn’t want to make this gofundme about me…my life has been pretty much ruined by constant health problems, and I’m used to it by now– I’ve let go of the majority of my younger self dreams–I recently decided I wanted to step to try and help my son, so he doesn’t have his dreams taken away like what happened to me.

For reasons not entirely understood, it seems our disorder gets worse as we get older–that’s why David Noah is having signs right now, but he’s relatively okay–as long as he takes his daily antbiotics, he can function for the most part like a normal child, same like I did at his age.

The major problems don’t hit until late 20s/30s…that’s why I got David Noah into acting at a young age, hoping he could ‘make it’ before things get worse (because then he’ll have the money and resources to handle the storm), but that’s almost like wishing for a lottery ticket to win…

David Noah is very intelligent, bright and funny, with a deep empathy for people (perhaps from watching his mother go in and out of the hospital his entire life?)

I want him to have a better life than I’ve had, and that’s why I’m pushing so hard right now.

(That and I’m suffering with a serious mouth infection that I have doubts whether or not I’m going to live through it, so if I don’t make it, I want to at least go to my grave knowing that I tried.)

So in gonna start with 23 and Me, and then hopefully get the better gene testing one day in the future

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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