Tasha (Soraya's mother)

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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 over the last 12 months — 2 in all, peaking in Jul 2026 with 1.

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The Telepathy Tapes · S2E35: Soraya's Story Part One | Talk Tracks · 24 Jun 2026 podcast

And the first thing they thought it was was something called spinal muscular atrophy, which

which at that time there was not a cure for.

And so they were actually preparing us that she would pass away in the first year of life.

We were stationed out in Virginia at that time, my husband's former military, and he had just gotten his orders to serve in Afghanistan.

And so we were meeting with genetic counselors, meeting with everybody, like, okay, are you going to try to have another child if Soraya passes away?

And all these questions, like, we went from nothing to everything.

And we got in for a lot of testing.

The SMA testing was negative.

Then they looked for other diseases like adrenal leukodystrophy, Rett syndrome, Zellweger's disease, disorders of neurotransmitters.

All of these things that I had briefly learned about from my board exams that I knew were all bad and they were all negative, which was great.

However, as two physicians trying to navigate life, we wanted to really try to fix this.

And it became very evident after a three-year journey of looking for every type of testing that was coming back inconclusive that we were likely not going to have an answer.

Right.

But even more so than not having a diagnosis, realizing that this wasn't going away, her treatment really was therapies, speech, OT, physical therapy.

We had nine subspecialists at that time because we knew every system of her body was impacted.

But she was making enough progress where we had no signs that her life was going to be limited, but we also had no signs that this was going away.

How was she eating at that time, not to cut you off?

No, she ended up getting a G-tube at seven months of age, and she still has one today.

So this is a part of her that we absolutely love the G-tube in the sense of it's kept her alive.

Yes, I can eat food.

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