S2E36: Soraya's Story Part Two | Talk Tracks

Summary

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The Telepathy Tapes – S2E36: Soraya's Story Part Two | Talk Tracks

Host: Kai Dickens
Guests: Soraya, Tasha (Soraya's mom)
Date: July 1, 2026

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Episode Overview

This deeply moving episode continues the story of Soraya, a teenager with a rare neuromuscular disease whose unexplained spiritual and telepathic gifts have transformed her family's understanding of life, death, and consciousness. Host Kai Dickens guides a conversation with Soraya and her mother, Tasha, exploring not only the medical and emotional journey of diagnosis and prognosis, but also the extraordinary sensitivity, intuition, and apparent communication with the other side that Soraya now describes as a normal part of her experience. The episode delves into family dynamics, the intersection of science and spirituality, and the urgent need for medical research, ultimately challenging listeners to rethink the boundaries of reality.

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Key Discussion Points & Insights

1. Recap of Soraya's Early Life & Diagnosis Journey

• Roller Coaster of Seeking a Diagnosis (03:04–04:35):
  Tasha recounts the first 10 years of Soraya's life:

  • Early focus on finding a diagnosis, intensive testing and therapy
  • Acceptance that no clear medical answer would be found
  • Transitioning hopes toward a long life with supports

  "We came to a place of acceptance, but also a change of how we dreamed of her life" – Tasha (03:18)

• Onset of New Symptoms & The Turning Point (04:35–06:10):

  • At age 10, Soraya experienced severe fatigue; a CT scan and sleep study led to the discovery of hypoventilation due to neuromuscular weakness
  • No cure; prognosis became much graver

  "At that point, we realized she has a progressive neuromuscular disease." – Tasha (04:52)

2. Difficult Conversations: Honesty & Family Transparency

• Breaking the News (06:10–09:50):
  • Soraya asked, "Is my life going to be shorter than expected?"—prompting a difficult but honest answer from her parents

  "She gave us a direct question, and I went ahead and said yes. And Soraya just started wailing." – Tasha (07:06)

  • Soraya wanted to remember the moment, so she announced to her family that they'd discuss her health openly on a significant day (Thanksgiving)

3. Spiritual and Sensory Experiences as Illness Progresses

• Family Encounters with Light & Comfort (09:52–10:54):

  • Recalling moments when Soraya reported comfort from a "white light" in medical crises
  • Tasha, a medically trained professional, describes internalizing but not sharing these unusual experiences with the mainstream medical community

  "I have always been a bit more open to things that are more existential...but I never talk about it with other doctors." – Tasha (10:23)

• Hospice as a Safe Space for Existential Experiences (11:18–14:24):

  • Hospice teams respected and encouraged Soraya's openness about her spiritual experiences
  • Both Soraya and Tasha found acceptance when discussing apparitions, connections, and meaning

  "What I noticed was no judgment. What I noticed was a lot of just nodding their head and just accepting." – Tasha (12:31)

4. Communication with the 'Other Side' & Family Dynamics

• Discussing Death in Families (18:17–19:53):

  • Tasha notes that many families avoid direct conversation about death, which can leave spiritually sensitive children isolated
  • Soraya describes how being able to talk openly is a relief, and shares stories of spiritual connection experienced with her sisters

• The "Contract of Love" & a Transformative Family Moment (21:30–24:45):

  • Soraya, during a particularly emotional dinner, expressed existential loss and sense of mission

  "I have a contract with you. Our contract is of love... it is not a Circle of life. It is a tree of life... if you don't believe me, look at the window." – Soraya (22:50)

  • At that moment, a bright light shone in, and the whole family felt its significance, including Ohana the cat, seen as Soraya’s spiritual companion
  • Soraya described being overwhelmed by the requests of spirits and people, sometimes all night, and feeling exhausted trying to help

  "The words that are coming, they're coming from a white ball of light. The white ball of light is swirling around me, and it's almost like I swallow it. And now I'm just speaking from a place of light." – Soraya (24:45)

• Skeptical but Moved (26:17):

  • Even Soraya’s skeptical father was moved to say:

  "Some people never have any experiences like this. This could be a once-in-a-lifetime experience of the other side telling us this is what we need to do. It is time to set everything aside and just love each other in the time that we have." – Tasha quoting her husband (26:22)

5. Gifts, Psychic Sensitivity, and Learning

• Soraya's Own View: Everyone Has Superpowers (28:54–29:25):

  • "Every kid has superpowers... any child born with any type of neurotypical difference, she feels, can do something like this." – Tasha recounts Soraya’s views
  • Soraya affirms this, adding anyone can connect in their own way

• How the Spiritual Messages Come Through (30:01–31:13):

  • Soraya describes perceiving presences in a multisensory way, sometimes seeing, sometimes hearing
  • She explains that her learning is instinctual, evolving daily, and sometimes guided by "angels" or a sense of inner knowing

6. Empathy and Out-of-the-Box Friendships

• Feeling Others’ Emotions Instinctively (34:12–37:32):

  • Soraya describes approaching a stranger at Ulta, sensing she was having a hard day, and offering comfort which became an ongoing friendship

  "I'm very. I have very big instincts who I want to be friends with, who do I not want to be friends with? I just...I think it depends on what I feel..." – Soraya (35:56)

  • This openness to adult friendships has become normal for her; her friend Courtney credits Soraya with helping her through major life changes

• Curiosity for Others’ Journeys (38:10):

  • For her birthday, Soraya wanted to spend time with a drag queen—not for entertainment, but out of genuine curiosity for their life and struggles, underscoring her empathy and commitment to the 'outsider'

7. Diagnosis Update & Hope for Research

• Rare Genetic Diagnosis Discovered (39:05–40:59):

  • After 13 years, Soraya was finally diagnosed with a TAOK1 gene deletion—making her 1 in 50 known cases worldwide, and the only one with neuromuscular symptoms this severe
  • Gene therapy is theoretically possible, but lacks funding

  "We just need the funds." – Tasha (40:31)

• Call to Action (41:03–41:53):

  • Research at the University of Washington, led by Dr. Smita Yadav, could potentially help, but requires at least $3 million for early studies ([donation link provided in show notes])

8. Soraya’s Reflections & Closing Messages

• Standing Against Stigma (42:02–42:22):

  "I think that special needs should not be made fun of or judged or looked because they really don't know what they're going through." – Soraya (42:02)

  • Encourages others to approach, ask, and not assume

• A Message to Her Sisters and Listeners (42:31–42:49):

  "I will say I miss them and I hope that they’re doing well." – Soraya (42:36)

• Tasha on Broader Impact:

  "This is not just about one gene. This is about the possibilities that are there for so many rare kids." (42:49)

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Notable Quotes & Memorable Moments

• On facing mortality as a family:

  "You want honesty... it takes bravery to share, definitely." – Kai Dickens (08:40)

• Spirit and purpose:

  "Our contract is love...I cannot leave until we hit that love. And right now, we're not there." – Soraya (22:50)

• Working with unseen forces:

  "The words that are coming, they're coming from a white ball of light... and now I'm just speaking from a place of light." – Soraya (24:45)

• The gift of difference:

  "Every kid has superpowers... it's not necessarily that one person has magical powers, but... we all could." – Tasha quoting Soraya (28:57)

• Empathy and spiritual learning:

  "It's the angels that put the words in my mouth that have me say it." – Soraya (34:39)

• On stigma and special needs:

  "Special needs should not be made fun of or judged... they really don't know what they're going through." – Soraya (42:02)

• A call for openness:

  "Even if you’re scared or hesitant, just do it. Because… you don’t want to assume what they’re thinking..." – Soraya (42:18)

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Timestamps for Important Segments

• Recap and early medical journey: 03:03–06:10
• First conversation about mortality: 06:10–09:50
• Spiritual experiences with 'white light': 09:52–10:54
• Hospice and holistic care: 11:18–14:24
• Family's experience with death and honesty: 18:17–19:53
• Soraya’s “contract of love” moment: 21:30–24:45
• Discussion of soul contracts and spirits: 24:45–26:17
• Gifts and view that everyone has superpowers: 28:54–29:25
• Sensing emotions & the Ulta story: 34:12–37:32
• Diagnosis and call to action for gene therapy research: 39:05–41:53
• Soraya's closing thoughts: 42:02–42:49

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Tone & Style

The conversation is emotionally open and heartfelt, blending pragmatic honesty with respect for mystery and the unknown. Guests and host speak with warmth, clarity, and vulnerability, making the profound accessible. Soraya's straightforward, wise-yet-youthful candor provides memorable, poignant moments while Tasha's dual grounding in medicine and spirituality brings depth and nuance.

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Resources & Call to Action

• Support TAOK1 Research:
  Listeners are encouraged to donate at together.uw.edu/campaign/taok1 (link in show notes/socials)

  "It could save lives, and would be the foundation to save so many people." – Tasha (42:49)

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Final Thought

This episode offers a rare window into one family's journey through uncertainty—medical, emotional, and spiritual. It ultimately affirms the power of honesty, empathy, and open-mindedness, urging listeners to appreciate the unseen connections that may shape our lives.

Transcript

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Start your GoFundMe today at gofundme.com that's gofundme.com gofundme.com this message reflects one person's experience. 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,

[Host/Interviewer]

science, spirituality, consciousness, and even unexplained phenomena.

[Kai Dickens]

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 Sariah, her mother, Tasha, and her father, Safi. This amazing family shared how Soraya's undiagnosed condition has led them through many emotional

[Host/Interviewer]

and physical ups and downs.

[Kai Dickens]

However, the spiritual side of their lives has been forever changed by unexplained gifts that Sariah developed, especially as her health declined. We'll hear more about these gifts today

[Host/Interviewer]

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.

[Soraya]

Yeah.

[Host/Interviewer]

Okay.

[Soraya]

Yeah.

[Tasha]

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 in, like, just fixating on what does she have so she can fix it by age 3, done every testing, realized we were not gonna 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.

[Soraya]

And.

[Tasha]

And then at age 10, everything changed. And she mentioned fatigue, which is just such a vague symptom. 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 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.

[Host/Interviewer]

How interesting.

[Tasha]

That was 2021 into 2022, and we realized that now she has a progressive neuromuscular disease, 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, Soraya 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 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? And it was a very direct question.

[Soraya]

I do give a lot of direct questions.

[Host/Interviewer]

Yes.

[Tasha]

And direct answers.

[Host/Interviewer]

Do you remember this conversation, Sariah?

[Soraya]

I guess, like, I can remember, just since I have memory issues.

[Tasha]

I remember she does have some memory issues.

[Soraya]

Yeah, I remember a little bit of it.

[Host/Interviewer]

Because you were 10 when you. When this.

[Soraya]

I was, yeah, I was 10.

[Host/Interviewer]

And so for you, Tasha, like, you didn't have a diagnosis still.

[Tasha]

We still did not have a diagnosis still.

[Soraya]

Yeah. We did not get any answers for

[Tasha]

that at that point. Correct.

[Host/Interviewer]

Okay. So, Sarai, you asked your mom, is my life going to be shorter than expected? And how did you answer that?

[Tasha]

Well, we were guided, meaning my husband and I, to answer direct questions. And while we thought we were prepared, because she was asking questions like, what is the ventilator for? And if I do more physical therapy, can I get stronger and more. We said, no, because your muscles are getting weaker. And then she said, well, how is my heart? And so we could answer these very specific questions. But when it got to that question, we weren't expecting that. And so we gave each other a look, like some couples do, where we think we can communicate effectively. But in this case, we were not effectively communicating. Cause he was giving me the look of don't say it. And I was giving him the look of, this is a direct question that we need to answer. And before I could really fully contemplate his not, I went ahead and said, yes. And Soraya just started wailing. And I was like, yeah, like I'm

[Soraya]

gonna be confused in that specific age. You know them all.

[Tasha]

I didn't know.

[Host/Interviewer]

So you.

[Tasha]

Yes.

[Host/Interviewer]

The thing is, like, so many couples go through stuff like this.

[Soraya]

Yeah.

[Kai Dickens]

But not nowhere near the weight or

[Host/Interviewer]

gravity of that type of question, but where you're trying to communicate. You wanna do the right thing. You've, like, sang it to the side.

[Soraya]

Right.

[Host/Interviewer]

You don't wanna feel shady in front of your kid by, like.

[Tasha]

Right, Exactly. And then the other thing that we weren't expecting, it's like, she knew she would have trouble remembering it. So at Thanksgiving, she said, hey, you guys, at Christmas, we're gonna have a conversation. We're gonna have a conversation about what's happening with my health. It was like she was preparing us, like you. Because she didn't want to forget that. She wanted to know this information.

[Soraya]

Because I care about honesty.

[Host/Interviewer]

Yes.

[Tasha]

But she wanted to remember the day because she knew that she would have hard time if it was like, tell me next Tuesday. That won't work for her. But she knows holidays. And so that's how we had this time marker. But the first thing she did was call for her sisters. And I was not ready for that. Where she's like, yasmeen, Lena, I've got news to tell you. Mom and dad just told me something big. And then we're looking at each other, and, yeah, we weren't ready for that.

[Soraya]

That was my instinct, unfortunately.

[Tasha]

And it's okay. It's okay.

[Host/Interviewer]

It is okay. Because just like you wanted honesty, I think all people want honesty. You know, I think it's really important that you definitely. It takes.

[Kai Dickens]

And it takes bravery to share, definitely.

[Host/Interviewer]

As much as it does to listen. I think it's more bravery to share.

[Soraya]

Yeah.

[Tasha]

And at that time, we had told Soraya's older sister, because she is very inquisitive, asks a lot of questions.

[Soraya]

She still does.

[Tasha]

She still does. And we also. She also always was worried that we weren't being honest with her. So it was one of those things where, like, we will tell you everything we know, but it's almost like she couldn't believe that we didn't have an answer. She couldn't. She felt like we must not be telling her something if we're saying there's not a diagnosis or a prognosis. And so, yeah, that was, like, the thought. That was her thought. Yeah.

[Host/Interviewer]

So that was what, about four years ago?

[Soraya]

Yeah. Yeah, four years ago. Yes.

[Tasha]

And at that time, I will say that while we didn't really talk about it a lot because we know there's so many unknowns, her doctors had given us a prognosis of about two years. So we had that kind of in the back of our mind. But we also knew that without a diagnosis, you don't really know. And that's what we, you know, stress to Soraya is like, we're not gonna get hung up on timelines because nobody knows.

[Kai Dickens]

Yeah.

[Tasha]

So we're just Doing the best we can.

[Host/Interviewer]

So one of the most powerful stories I've ever heard was that story when you were at wit's end and then you saw white light comforting Soraya, and she comforted. Like, she's quieted down, right?

[Soraya]

Totally.

[Host/Interviewer]

I'm curious, like, have you shared any of Soraya's incredible experiences to connect with spirits or people on the other side with the medical community? And having gone to medical school and being very science and medically grounded, like, how have you made sense of all of this?

[Tasha]

So I will say that I have always been a bit more open to things that are more existential. And I also, from being in the medical background, don't share that with anybody because I find it to be where spook people out. Spook people out, but then also be judged or have people say that you're crazy or try to challenge you.

[Soraya]

Yeah, I don't like to be challenged.

[Tasha]

But, yes, when I don't want to really debate it, I just want to accept it. And so I've always had this as, like, a side thing that I would never talk about. So whatever ideas I had about psychic spirituality connections is something that I was always intrigued about. I love astrology. I love these things. Whenever anybody knew of a psychic, I would want to go to.

[Soraya]

I love science. Yes.

[Host/Interviewer]

I have really good psychic medium to share with you guys.

[Tasha]

Yes. That's what I'm all about. So when it came to sharing with the medical community, that's a no. Not with anybody. However, what I was feeling is really safe with the hospice community. I do feel like that team feels very different than our entire medical journey. And I would like to think that that is true of all hospice care teams because of what they do. I am learning so much of this holistic approach, this idea of quality of life, and also the fact that they have a chaplain, that they have a social worker, that they have massage therapy, that they have music therapy. It's almost like they already know that we need different modalities, that it felt like a very safe space for me to start asking questions. And my questions would be, well, one is to explain to Soraya what a chaplain is. When I tell her, you can talk about spirituality, she started sharing about some of these stories. And what I noticed was no judgment. What I noticed was a lot of just nodding their head and just accepting.

[Soraya]

And so, yeah, I was worried about the reaction. I would say, yeah.

[Tasha]

And she just felt so comfortable talking about it that then I started asking the chaplain, do you hear stories like this? Is this common and she would say yes, but would not tell me more stories. And I want to know more stories.

[Soraya]

And so yes, because she's very like, kind of like, kind of like if you're studying, like learn this, what's how, what is this like?

[Tasha]

And I think in the medical community you have to use HIPAA where you're not supposed to share other people's stories. And so I think that they really stay true to that. But I will say as a parent, I, like many parents that are looking for connection of what's happening with my kid, please tell me that there's somebody else that is able to do this or is doing this. I just want to know if this is normal for what they see. And I wasn't quite getting that. So then when it was her physician, I asked him and he's very evidence based and very thoughtful and specific with his words. And I'm like, I'm just saying Soraya is connecting. Do you see this happen with other children that you work with? And he said yes, just one word answers. And I said, do you feel like as kids get closer to death or as their bodies weakens that this connection gets stronger? And he says yes. And that was it. So that was, that was the conversation. But I do feel like that was huge in the sense of I have a space that I can share and I have a space where I'm not judged and it is the medical community. So in that regard, that's as far as it's gotten. I have not thought of, nor do I feel comfortable sharing with all of her physicians. And you know, what is that about? Well, that's a whole nother podcast.

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[Host/Interviewer]

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[Tasha]

My question that I want to know as a parent is like, this has to be happening with other kids. But I think what's tricky is I've also heard from our hospice team that many families won't allow them to talk about death. And so yet they're coming for these services. But, you know, whether it's their family values, their culture that they don't. They don't talk about it. So I also feel like there's probably so much more of this. If there was a space for this,

[Host/Interviewer]

you're so lucky your parents will talk

[Kai Dickens]

to you about it, because could you

[Host/Interviewer]

imagine experiencing this and feeling like you couldn't talk about it?

[Soraya]

Yeah, it would be so bad. I'll be like. I probably would say in my bedroom, it would be like, this is what's happening. This is what's happening.

[Tasha]

Just talk to yourself.

[Soraya]

Yeah, I'm like, I'm talking to myself about this.

[Tasha]

You'd have to get it out.

[Host/Interviewer]

You feel like you can talk to your sisters about it too, right?

[Soraya]

Um, yeah, I think that they have their own personal opinions about that, but I think they're open to it. And, like, me and my sisters have a very. Like, I can tell them any spiritual or they sometimes have actually felt spirituality. For example, like, I would say, this person's giving you a hug. And I was like, do you feel it? And they're like, yes, I actually feel someone hugging me. I don't. Like, it was crazy to me because I was saying it, and it was a feeling that they were having. And I was like, that's pretty interesting.

[Host/Interviewer]

Have there been any more stories like that as she's gotten older?

[Tasha]

Yes. There have been episodes where we're kind of in a rough spot, and it usually happens when all five of us are together and she'll start speaking. And her sisters, while they definitely do know that she's connecting, because there are times where we all look at each other, and it's almost like this language is coming out of her mouth that are not. That's not language that she would use. And it's about, like, love, and it's about our purpose. And we're like, okay, she's doing it. And so there's been short episodes of that that have popped up. Most recently, there was an episode where, honestly, Soraya was really struggling in the reality of her life. And it started out at the dinner table where she was sobbing, and she was saying to her sisters, and there has been a big strain in the relationship as she is getting closer to death, and she's talking about death. They do not want to talk about death.

[Soraya]

I can definitely get an example. I think we were having a conversation about what's been going on, and my older sister and my little sister decided to go upstairs and go to their bedroom.

[Tasha]

So they kind of, like, leave. And so there have been instances where this has been happening. And so Saria's at the kitchen.

[Soraya]

I would say, like, we're. I'm definitely gonna make this part of it. We're not really close, but we're trying. We're doing everything that we can.

[Tasha]

And then this story, I think, is what kind of started the journey of trying to make that better. And it was where you were sobbing, and you were like, I am losing everything. I am losing my ability to walk. I am losing my ability to eat. My mouth gets tired when I'm chewing. I'm losing everything. And I only have my family. And now I'm losing my sisters. And she is just sobbing.

[Soraya]

I would say I'm a very heavy, emotional person.

[Tasha]

And then as she is sobbing, the sisters try to go leave. And we say, no, we need to come together. Let's all sit in the family room. Let's just, like, kind of hash this out. But what happened when we transitioned rooms is there was something else that happened with Soraya where she was like, you guys, I have a contract with you. And our contract is of love. I was meant to be here with you. And our contract is love. I cannot leave until we hit that love. And right now, we're not there. We are not there. And then she said, well, I have a contract with Ohana, which is her cat, which is. We call it her spirit animal. And she's like, ohana and I, we are from the same universe, you guys. We have to get this mission, and the mission is love, and we are not there. And she said, I want you all to know that it is not a Circle of life. It is a tree of life. And with this tree of life is Mother Nature. And if you don't believe me, look at the window. And in that time, and there's light, Bright light shines through the window. And it is like 5:30 in the evening. And both sisters look at the light and they start crying. Because they realize, like, she's serious. She's serious.

[Soraya]

Yeah.

[Tasha]

And it was like, whatever disgruntled anger that they had towards her with, like, here we go again. Went out the window. And of course, in this light is Ohana the cat, just literally laying in the sun, being like, that's right. I'm with her. Like, that's what it felt like. That there was this moment. And she goes through. And she goes through each person on what they need to work with. And she's like, yasmeen, you need to quit being hard on yourself. You are feeling so guilty for the way that you have treated me. Know that you are the best sister and I love you. Like, mom, you are too stressed. I know that you're a good mom. You need to know. And it's like everything that interferes. And she is going through each person and she's like, we are here for love. And she said, I am working with the angels. And the angels work with God. And I'm trying to convince the angels to keep me here because I'm not done. I need to get us to love. And I don't know what they're gonna decide. Cause that's not up to me. But I do work with the angels. And I also want you to know that all night long, people are asking me to help them. They're asking me to help them all night. She said, some nights I don't even sleep. They want me to help their pets. They want me to help their sick uncles. They want me to help all the people.

[Soraya]

All day.

[Tasha]

I'm exhausted. I'm exhausted for everybody. I'm trying to heal. I am trying to heal everybody. And it's so tiring. And you know what else right now? The words that are coming, they're coming from a white ball of light. The white ball of light is swirling around me, and it's almost like I swallow it. And now I'm just speaking from a place of light.

[Kai Dickens]

Wow.

[Host/Interviewer]

When you talk about at night, like, hearing all the voices, I mean, do you think those are, like, the prayers of people who are here? Do you think it's people from the other side wanting you to interfere with people who are alive?

[Soraya]

I think, like, the other side of that, like, people who have passed away. I think some women just need help or just they need something to be healed. And I think I still have that now.

[Host/Interviewer]

Yeah.

[Soraya]

Which I don't talk about as much, but I would say that it's there.

[Host/Interviewer]

And when you talk about, like, a soul contract, what does that mean?

[Soraya]

I think it's more like of a goal in that contract. It's like, emotionally, I think that's what I need from them, but it's also what I deeply, like, desire to have with my family.

[Host/Interviewer]

That is fascinating. What a beautiful. Did everything change for your family in that moment?

[Tasha]

In that moment, yes. You know, my husband, he's pretty skeptical about these things, and he was sobbing, and he looked at Yasmeen and Lina and he said, listen, some people never have any experiences like this. This could be a once in a lifetime experience of the other side telling us this is what we need to do. It is time to set everything aside and just love each other in the time that we have. Anytime you get frustrated by, just remember this moment that you are literally getting divine guidance on what we need to be doing in this life. And so it has just been serving as a reminder. And then my question for Soraya was, you know, the next day, I'm like, do you remember that? She's like, yeah. Cause I'm like, was this, like, a transient state? And she's like, oh, yeah. I remember the whole thing. I'm like, so people do come to you at night? She's like, oh, yeah. And I'm like. And like, she said, like, she doesn't talk about it all the time, but surely people aren't asking her about this.

[Host/Interviewer]

Right? Right. Exactly.

[Tasha]

And as Soraya has gotten more weak in her physical body, she has asked a lot of questions, has asked to meet spiritual leaders. But then also, when she stopped going to school, she watches a lot of screens, but she would gravitate towards psychics, mediums, like, ghost hunters. And I'm like, doesn't this freak you out? She's like, no. And then she's like, this is what I'm gonna do when I grow up. And I was like, what do you mean? She's like, well, I can already do this, but I just need to, like, learn the way that they're doing it. And she's like, different ways to their doctor. She's like, mom, everybody can do this, but their ways are just like, a different way of doing it. So she's like, my way is not, like, their way, but I can, like, I can work on the way that they do it, so that way I can do that too. And again, it's just like a different way of thinking about things that I had never thought of. For example, when I started listening to this podcast and we were in season one and there wasn't a season two at that time, and I was like, soraya, I am listening to this podcast and it's about children who have autism and they're non verbal and there are these connections that they have with their caregiver. And I'm like, what do you think about that? She's like, yeah, mom, everybody knows that. And I'm like, what? She's like, yeah, they all can do that. And I was like, no, but they, like, communicate with, you know, with each other. She's like, yeah, like, she was just so not impressed by anything that I was saying.

[Host/Interviewer]

Meaning, like, like reading minds did not shock you. That felt.

[Soraya]

No, she's still like, yeah, like, what's the.

[Tasha]

I'm like, I don't know. And she said, every kid has superpowers, so it's not necessarily that one person has magical powers, but that any child that was born with any type of neurotypical difference, she feels can do something like this. And she also has made it clear that people have different skills and different ways that they connect, but we all could.

[Host/Interviewer]

Does that sound right, Soraya?

[Soraya]

My mom's wholly correct on the details.

[Host/Interviewer]

And is it mostly people that are related to your family in some way, like ancestors and loved ones that your family knew, or is it obviously Chloe but came and so it sounds like other people come, but yeah, it's kind

[Soraya]

of like all of it's like random. It's like it just comes when it wants to come.

[Tasha]

Like now it's like all different. All different people. Yeah, it takes a little bit more.

[Soraya]

It takes more time because up to like, focus of what they're saying, focus focused what they're trying to do and all that kind of stuff.

[Host/Interviewer]

And can you see them or is it hear them like, for you?

[Soraya]

I can see them, but I don't know what they specifically look like or what they're wearing. But I can just hear by voice and it kind of connects with a little bit of my brain can read it or just by hearing it. It's very different for me. Like, it definitely has helped me and like, when I talk about it, people, I'm like, I hope I'm not spooking Yelp and I have speech reality. Like, I'm very open to talk about that because Like, I think not a lot of people talk about it when I think they should.

[Host/Interviewer]

And your mom said that at one point you've wanted more like teaching. I know, it's really cool.

[Tasha]

I know. I'm so proud of you.

[Host/Interviewer]

It's really cool.

[Tasha]

I told you that already, but I'm sure just so proud of you.

[Soraya]

Yeah, my mom says a lot and

[Host/Interviewer]

there's a lot to be proud of. When you said that you wanted to kind of gain more information or like learn more, what did that look like? And like, were you able to meet like, what would that be called? Like, spiritual masters, I guess.

[Soraya]

I think I would call it like a spiritual journey. I think that it was like when I became a child. And I think as I got older, I think the more in tune I am and I get to learn something new a little bit every day, that I get to experience it.

[Host/Interviewer]

Like, who do you learn it from?

[Kai Dickens]

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[Soraya]

I think I learned it from, like, my instincts and myself and how whatever. Like, whatever the spiritual, whatever it wants to show its way or whatever technique it does. I'm gonna do what I think is easier for me or just something that I can make sure that, like, okay, I'm talking to this person. I don't know this person, but I'm gonna just have a conversation with it. And I sometimes have conversations, but, like, not like I do it sometimes, but, like, as I talk to them, and I'm very, like, I'm focused of, like, the way they're speaking it or what they're interpreting.

[Host/Interviewer]

So it's so interesting because you're plugging into something. It sounds like, yeah, I'm very, like,

[Soraya]

in tuned and plugged.

[Tasha]

Can I share one thing that kind of really surprised me in what she's saying, which is in line with what you're saying, is she had told me once we tell Soraya that her gift is her ability to feel what other people are feeling, that she has a way to read when somebody's having a bad day or a good day or a vibe.

[Soraya]

They can just read real people's emotions. Yes.

[Tasha]

And one day she's like, you know, mom, you always think that I'm saying the right thing, but she's like, it's the angels that put the words in my mouth that have me say it. And so when she's talking about, I'm learning from something, and I just go where they guide me. It is an example of that where I don't know either, but I'm like, how do you sense or know that I'm having a bad day? Or how can you tell that I'm stressed?

[Soraya]

I think body language or their face, emotion, or, like, if I could, I just sense my energy.

[Host/Interviewer]

What does that mean?

[Soraya]

I think a very good example was when I first met one of my friends. Her name's Courtney, like, from Alta. And I saw her struggling, being very emotional. And I was like, there's something going on. But whatever it is, I should just go front with this person.

[Tasha]

So this is a worker at Ulta. She is shopping, like, and she's talking about visualizing somebody looking like they had a bad day. That works there.

[Soraya]

Yeah.

[Tasha]

This is the first time she's ever even met this person.

[Soraya]

I don't know this person. I don't know.

[Tasha]

She's there to shop, and she is now eyeing this girl that she's sensing has had a bad day.

[Soraya]

And I just go up to her and I'm like, are you okay? She was like, well, I'm kind of being overwhelmed because I'm moving at a new apartment. And I was like, hey, can I give you a hug? And I give that person that hug. And I was like, we could be friends, you know, like best friends. And, you know, like, I'm here when you need me, and I just do that. I'm very. I very. I have very big instincts who I want to be friends with, who do I not want to be friends with? I just. I think it's depend on what I feel, but also, like, is that the right person?

[Tasha]

And Courtney and you guys are still best friends?

[Soraya]

Still best friends. I still have her phone number.

[Juan Naula]

Yes.

[Tasha]

And Courtney actually shared later with me that she was struggling with even a lot more than what she had shared and how that moment meant so much to her that then Soraya and Courtney carried on their friendship. So she would come over, spend time. They'd go to my house, come to my house.

[Juan Naula]

Yeah.

[Tasha]

Have lunch dates. And, you know, Courtney's in her 20s, and so maybe not a typical friendship, but I think that, yeah, I have

[Soraya]

a lot of, like, adult friends.

[Tasha]

Yes. Yes. Which may not be very conventional for this pediatrician mom to say, but Saria has taught me to think outside of the box. And so Courtney had twins recently, and

[Soraya]

one of them had a heart condition, and one was healthy. So she would go to the hospital, see the child that's sick, then she misses the health kid, Then when she sees the healthy kid, then she misses the sick kid.

[Tasha]

But do you know what she says? Yeah, I'm so glad I've met you, Sariah. Like, you're.

[Soraya]

Yeah. She always says positive things about me.

[Juan Naula]

Yeah.

[Tasha]

Like, you helped prepare her for this life, and now she's up part of our life.

[Soraya]

Definitely.

[Host/Interviewer]

It's a sweet story.

[Soraya]

Yeah.

[Host/Interviewer]

You and Courtney are lucky to have each other.

[Soraya]

Definitely.

[Host/Interviewer]

And I think it's very good to have friends of all sorts of ages.

[Soraya]

Yeah, definitely.

[Tasha]

Like last year for her birthday, out of nowhere, she's like, I want to spend time with the drag queen.

[Kai Dickens]

I love it.

[Tasha]

And so it's like she wants to be the voice for the underdog, and the underdog is anybody who has been on the outside.

[Host/Interviewer]

Oh, yeah.

[Tasha]

And she likes to know, like, so what she wanted to do with the drag queen is not a show. She said, I want to know, like, the struggles of their life and, like, how did they still, like, find their passion and, like, what.

[Host/Interviewer]

Yeah.

[Tasha]

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.

[Host/Interviewer]

I love that. And I think it is true, though, like, if you've been othered or marginalized or had to fight for your belonging in any way, like, I think if you're at least a bit of an older soul, then you relate to all the trials of everyone else.

[Tasha]

That's it.

[Host/Interviewer]

We have to start to wrap up. So as of today, have you gotten a formal diagnosis?

[Tasha]

Surprisingly, we actually did get a diagnosis very recently. And 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 did find out that she has a gene called Tau K1. It's called TAOK1 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 funding. 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.

[Host/Interviewer]

So for all the 49 other cases of what Soraya has, people can go get gene therapy and hopefully have become a much more productive life.

[Tasha]

There's actual treatment available in the sense that the science does exist, the funding is not there. And so they all have the ability for potential gene therapy, and the science and the scientists are there, but the funding has not been covered yet. And so that is where they need help.

[Kai Dickens]

Wow.

[Host/Interviewer]

And how much do you think would help get this Just kicked out?

[Tasha]

Minimum $3 million. I mean, we're talking millions of dollars. And that is just due to how much goes into thoughtfully doing research on humans. You want to make sure that this can be done safely. And in order to do that, we need funding so the research can be done.

[Host/Interviewer]

Yeah. In case there's any listeners who want to fund toward this Research and hopefully Soraya's, you know, gene therapy, which would be a miracle for your family. Is there a website where they can go donate or is there anything like that that's out there?

[Tasha]

Yes, currently there is a researcher at University of Washington and we have her website.

[Host/Interviewer]

Oh, wow. Okay. So I was just handed where people can go to donate. It's together UW edu campaign taok1. We'll also put this in our show notes and on social media and that type of thing.

[Tasha]

Thank you.

[Host/Interviewer]

All right, awesome. What final thoughts do you want to add, Sarai, or things you want people to know or understand or wisdoms you've acquired?

[Soraya]

I think that special needs should not be made fun of or judged or looked because they really don't know what they're going through.

[Host/Interviewer]

Yeah. And maybe we talk about this again. You put a note on your wheelchair and what did it say? And what do you want people to do?

[Soraya]

Like, even if you're scared or hesitant, just do it. Because.

[Host/Interviewer]

And just come up and ask you.

[Soraya]

Yeah, because, like, you don't want to assume what they're thinking or what they're whispering or what they're talking about.

[Host/Interviewer]

Like, Sarai, do you want to say anything to your sisters who might watch this?

[Soraya]

I will say I miss them and I hope that they're doing well.

[Host/Interviewer]

Sweet. Well, if anyone out there is listening, who could put a few million toward this, I mean, it could save or

[Tasha]

it could save lives, and it would be the foundation to save so many people. Not only like Soraya, but this really sets things off for anyone with a rare disease. This is not just about one gene. This is about the possibilities that are there for so many rare kids.

[Host/Interviewer]

Yeah. Awesome. University of Washington's doing the research.

[Tasha]

Yes.

[Host/Interviewer]

So cool.

[Tasha]

Dr. Smita Yadav. She's wonderful.

[Host/Interviewer]

Dr. Smita, we're coming for you. We're gonna make it happen.

[Tasha]

Thank you.

[Host/Interviewer]

Awesome. All right, well, thank you for making the way all the way from Cincinnati to hear it.

[Tasha]

Yeah.

[Kai Dickens]

That's it for this episode of the Talk Tracks, but new episodes will be released every Wednesday, so stay tuned as we work to unravel all the threads, even the veiled ones that knit together our reality. And please remember to stay kind, stay curious, and that being a true skeptic requires an open mind to dive in deeper. Subscribe to our Backstage Pass by visiting our website. With it, you'll unlock access to bonus content like telepathy, tests, Ask me anything, interviews with myself and guests. You'll be able to enjoy the podcast ad free. Connect with other members on our Telepathy Tribe Discord and hear and see exclusive content from the Telepathy Tapes Vault. Visit our [e-mail] for more info on how to subscribe to our Backstage Pass thank you to my amazing collaborators, producers Katherine Ellis and Selena Kennedy. Technical Directing, audio mix and finishing by Jeremy Cole, opening and closing music by Elizabeth PW and original logo and cover art by Ben Condora. Design I'm Kai Dickens, your executive producer, writer and host.