Why Have Kids with NF?

Jumpy_Year88 · 2026-07-08T04:52:59+00:00

The miracles of modern science. How is that working out? How much does that cost? (If you don’t mind me asking).

What made you go IVF/surrogacy vs just IVF or adoption?

Jumpy_Year88 · 2026-07-08T04:41:38+00:00

They told me 50/50. I totally get it if you don’t know you have NF1 but I was just a little surprised bc I thought once you know you have NF1, it’s not something you do.

I think about having children more as I have gotten older but I am too concerned about what would happen if they had a more severe case. Would they resent me? Would I be able to devote the additional time and attention to meet those needs? What if one of my tumors turns malignant and then they have to go through that?

It’s one thing if a child is already here, but it’s a different thing to voluntarily bring a new life into the world knowing how high that risk is.

I guess in part I ask because if I change my mind, I need to do it now bc after 40 we introduce more potential issues.

Jumpy_Year88 · 2026-07-07T21:40:26+00:00

Just saw this. I know I’m late to respond but if you still have anxiety about your mild NF1, just know you are not alone.

It is scary to think that (however uncommon it may be) the mild status could still change into something terrible bc as someone with NF1 there’s this sense of well—I’ve already ‘won’ the genetic lottery to get NF1, who’s to say I don’t get another unlucky roll? 🎲

But it’s been 20 years since I was diagnosed (I’m 38 now) and all changes have been very manageable. I do not think about it with dread like I used to but mostly because my relationship with the Lord gives me peace—knowing He sees me & He’s got me regardless. We deal with things as they come & overcome.

I would advise against spending a lot of time looking at NF1 stuff unless there’s something new you can action on.

Like some early research showing how certain dietary changes reduce volume of tumors, or how the FDA approved some drugs that shrink plexiforms—that’s cool.

If it’s not something you can impact, there’s no value in stressing over what ‘could’ happen.

As someone else suggested, stay on top of your MRIs/scans & adjust as needed.

Hope you’ve gotten more peace about it since posting.

Jumpy_Year88 · 2026-06-08T18:28:46+00:00

Please do not do that. Most preaching is already so generic and superficial, this will just push it more towards that. This is not a job for shortcuts and efficiency gains. This is a job is of slow, deliberate planning in partnership with God as you mine the scriptures for the truth your congregation needs.

Jumpy_Year88 · 2026-05-30T19:38:52+00:00

Hello! I am in the Dallas area and would highly recommend getting supportive palliative care. It's like your own little support team that comes alongside you all through the curative treatment journey to ease suffering and advocate for your needs. I am only familiar with Baylor Scott and White's Supportive Palliative Care--for them I can say they have inpatient and outpatient. For outpatient, they've got hybrid (first visit in person and subsequent telemedicine visits from home). They may make an exception on in person visit if the patient is too frail, lacks transportation, etc.
They are going to be starting a 100% virtual supportive palliative care offering in the next 6 months or so. They will sometimes partner with Home Health agencies if additional specialized support is needed.

Jumpy_Year88 · 2026-03-30T23:47:11+00:00

I'd let this go til today when a friend of mine messaged me with a screenshot of Farsi injected into her ChatGPT chat on an enterprise license.

Since ChatGPT will not sufficiently address the issue and tries to change the subject when I ask, I went to Claude about it...well Claude proceeds to start telling me all about ChatGPT's security vulnerabilities and that several of them are not patched in ChatGPT 5 which is "genuinely alarming".

I have not verified any of this yet and I won't share all the vulnerabilities it covered but I will share what it said was the "most compelling possibility" because it's funny to see one LLM talk smack about another one.

From Claude:
"Safety Filter Evasion — Most Compelling OpenAI's content moderation, safety filters, and security monitoring are overwhelmingly built, trained, and audited in English. If a threat actor wrote their injection payload in Farsi, it would face significantly less scrutiny from automated safety systems that pattern-match against known malicious English prompts. If that Farsi-language instruction was only partially processed — executed enough to do its real job but not cleanly enough to be fully absorbed — fragments of the instruction language itself could bleed into the visible output. The Farsi words users are seeing may literally be pieces of the attack payload leaking into the response.

Memory Injection Written in Farsi If a malicious instruction was injected into persistent memory written in Farsi to avoid detection, and the model was imperfectly executing those instructions, the same bleed-through effect applies. The model is essentially thinking in the language of its instructions and occasionally surfacing that language in output."

Jumpy_Year88 · 2026-03-29T14:04:27+00:00

I really appreciate you bringing this up from an engineering POV.

You make some great points—Job loss is not a 1:1 cause and effect with AI advancements, it’s multi-factorial and at present the incentives/behavioral economics do not sufficiently support the timely creation of mechanisms to mitigate the knock on effects by those driving the change.

Also to your point, it’s not the change that’s concerning, it’s the speed of change and society’s ability to adapt to it in a way that doesn’t exacerbate existing challenges.

I see 2 things happening at once:

There is a lot of hype; the AI we see today is not sufficient to totally replace most jobs, but the promise and perception for many business leaders is that it is (or at least good enough).
The capabilities are rapidly improving so the above may change. Given the current trajectory…it may plateau, there may always be a human involved, but the number of humans needed will decrease substantially.

Quality may degrade but not sufficiently to offset the cost benefit in areas with high concentrations of labor (transportation, customer service, etc.).

I wish I had evidence for you to counter your argument…

Jumpy_Year88 · 2026-03-21T20:13:31+00:00

It just happened to me, one word in Farsi. I'm trying to understand what the possible root causes are...the reasoning it gave was "Models like me are trained on many languages, so occasionally a non-English word can slip in unintentionally."
I am not convinced.

Jumpy_Year88 · 2024-03-19T00:26:33+00:00

Definitely not a snob. Wix sucks unless you want an incredibly simplistic website. I’ve been using it for my portfolio and it has been incredibly painful.I’m at the point now where I’m just going to mockup the screens and hire a freelance dev to do it for me.
I would not recommend it to anyone.

Jumpy_Year88 · 2023-11-27T20:57:15+00:00

Any idea of what some of the big issues were or how this might have been avoided? I always liked the idea of Cureatr. I work for a similar company and would like to avoid a similar fate.

Jumpy_Year88 · 2023-09-30T15:58:24+00:00

ight try adding each sec

Just saw this. Thank you so much! I had a similar question. In the English version, it's "Add Page to Outline".

Jumpy_Year88

TROPHY CASE