S2E36: Soraya's Story Part Two | Talk Tracks

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The Telepathy Tapes 42 min 2 speakers 5 chapters transcribed 2 months ago
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Kai Dickens 0:03
Hi, everyone. I'm Kai Dickens, and welcome to The Talk Tracks, brought to you weekly by TTT Media. In this series, we explore the threads that weave together our understanding of reality, science, spirituality, consciousness, and even unexplained phenomena. Because every era has ideas once dismissed as impossible until someone was willing to investigate them seriously. And on this show, we do just that. If you want to see our incredible guests in person, we have a video version of this episode on the Telepathy Tapes YouTube page. Last week, we met Soraya, her mother, Tasha, and her father, Safi. This amazing family shared how Soraya's undiagnosed condition has led them through many emotional and physical ups and downs.
Kai Dickens 0:45
However, the spiritual side of their lives has been forever changed by unexplained gifts that Soraya developed, especially as her health declined. We'll hear more about these gifts today and how they forever impact the family. And then I think we should get like a really quick recap of like the first 10 years or something.
Tasha (Soraya's mother) 1:01
Yeah. Okay. Yeah. So I would say, you know, the first three years of Soraya's life, knowing that something was going on, we were on a roller coaster of looking for what diagnosis does she have and honestly tunnel vision and like just fixating on what does she have so she can fix it. By age three... done every testing, realized we were not going to find an answer, came to a place of acceptance, but also a change of how we dreamed of her life, which was going to be a long life with a child with a disability, with a lot of supports, but that would lead a long, healthy life with her 15 subspecialists and her four therapies per week. And then at age 10, everything changed. And she mentioned fatigue, which is just such a vague symptom.
Tasha (Soraya's mother) 1:45
And talking to her doctors over telehealth about her fatigue, her pulmonologist recommended getting a CT scan of her lungs. Like, let's just see what's going on. And when we went through... the machine and the tech told her to take a deep breath. It was the first time that I did not see any chest wall movement with that deep inhale. And I was like, oh, wow, this is something different. The pulmonologist was very concerned and felt like this was a huge change and immediately got us in for a sleep study to kind of just see how she's breathing and at night. And it was then that we realized that she was indeed hypoventilating, where she was unable to exhale that CO2. And that was directly not related to lungs, but actual muscle weakness.
Tasha (Soraya's mother) 2:33
Interesting. That was 2021 into 2022. And we realized that now she has a progressive neuromuscular disease.
Soraya 2:45
Mm-hmm.
Tasha (Soraya's mother) 2:46
And with that, there's no cure. And with that, we know that the thing that would take her life is the respiratory component. At that point, Sariah asked us, what's happening with my body? And I think that's a very personal decision with a lot of families and like, how transparent are you? And I think my husband and I went back and forth with it. But we really looked at it as at that point, we had given her 10 years of therapy and And the one thing that we wanted her to always have is her voice and an understanding of her body. And so we explained to her that she had this condition and we tried to answer direct questions as we had been guided by her amazing medical team and her therapist. But then she said, is my life going to be shorter than expected?
Tasha (Soraya's mother) 3:37
And it was a very direct question.
Kai Dickens 3:40
I do give a lot of direct questions.
Soraya 3:43
Yes, and direct answers. Do you remember this conversation, Soraya? I guess, like, I can remember just since I have memory issues. She does have some memory issues.
Kai Dickens 3:53
Yeah. I remember a little bit of it. Because you were 10 when you opened this? I was, yeah, I was 10. And so for you, Tasha, like, you didn't have a diagnosis still. We still did not have a diagnosis still. Yeah, we did not get any answers for that. At that point, correct. Okay. So, Sarai, you asked your mom, is my life going to be shorter than expected? And how did you answer that?

How did Soraya’s symptoms progress from childhood to a respiratory crisis by age 10?

Tasha (Soraya's mother) 4:14
Well— We were guided, meaning my husband and I, to answer direct questions.

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