Tasha (Soraya's mother)
speaker
575 appearances
2 recordings
1 series
first heard Jun 2026
last heard 1 Jul
Tasha (Soraya's mother)’s voice in public audio — every appearance, attributed to the second.
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recordings per month · last 12 monthsRecordings per month over the last 12 months — 2 in all, peaking in Jul 2026 with 1.
Appearances
And then I want to go do makeup.
So there's, like, that human experience.
Like, she has this, like, profound thing that she says and then she's like, and then we're going to go to Ulta.
Surprisingly, we actually did get a diagnosis very recently.
And, you know, here we've been 13 years really coming to a place of accepting that she wouldn't have a diagnosis.
And lo and behold, the lab at the NIH said,
did find out that she has a gene called TAOK1.
It's called T-A-O-K-1 gene deletion.
And this is a very rare condition.
She is one in 50 cases worldwide.
But for Soraya, surprisingly, she's the only one out of the 50 that actually has symptoms of a neuromuscular disease.
And so while it was very exciting to get the diagnosis, it was also really hard to accept that her medical symptoms are more severe than anyone else's.
And I think she's kind of bummed about her genetic diagnosis.
So she's bummed because we, at this point, can't do anything with it.
But in talking to the scientists that are behind it, they're like, don't give up hope.
While the science doesn't exist yet for Soraya, the possibility is there.
This just takes time.
And the only way that we can even look into a possibility is if we raise like millions of dollars to put into the research.
But the research exists and the people are there.
We just need the funds.
Showing 301–320 of 575 · page 16 of 29
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