S2E36: Soraya's Story Part Two | Talk Tracks

In part two of our conversation with Soraya and her parents, Tasha and Safi, the family shares the extraordinary spiritual experiences that emerged as Soraya's health declined. After years of searching for answers about her rare and progressive condition, Soraya began speaking about angels, soul contracts, loved ones on the other side, and what she believes is her life’s mission: to teach her family about love. She describes late-night visits from spirits asking for healing and a profound family moment that changed their relationships forever. The conversation also explores the tension between science and spirituality, the surprising openness they’ve found within hospice care, and the emotional reality of raising a child who speaks candidly about mortality while offering wisdom far beyond her years. Finally, the family shares the recent discovery of Soraya's ultra-rare diagnosis of TAOK1 gene deletion and their hope that future research could not only change Soraya's life, but the lives of countless families affected by rare diseases. For more information and to donate towards research targeting Soraya's illness, click here: https://together.uw.edu/campaign/taok1 ________________ Join The Telepathy Tapes Backstage Pass to get ad-free episodes, never-before-heard interviews, behind-the-scenes documentary footage, and access to our private Discord community. This is your invitation to come closer. To help shape what’s next. To be more than a listener… to be a co-creator of this paradigm shift. So if you’ve felt moved, if you’ve felt seen, if you’ve felt the call—subscribe today and join us: https://thetelepathytapes.com/ ________________ Thank you to our sponsors! Luminara https://www.luminara.care/ - If you’re curious about energy healing and ready to experience it for yourself, Luminara is offering 20% off your first session for listeners of The Telepathy Tapes. Just go to luminara.care https://www.luminara.care/ and use code TAPES20. Quince https://www.quince.com/tapes - Elevate your summer wardrobe. Go to Quince.com/tapes https://www.quince.com/tapes for free shipping on your order and 365-day returns. Ka'Chava https://kachava.com/ - Go to https://kachava.com https://kachava.com/ and use code TAPES for 15% off your first order. BiOptimizers https://bioptimizers.com/tapes - Make this the year you finally get your sleep, your energy, and yourself back. Get 15% off at https://bioptimizers.com/tapes when you use my code, TAPES. Ruggable http://ruggable.com/ - Refresh your home. Get 10% off your first order, sitewide, with promo code TAPES at RUGGABLE.com http://ruggable.com/. Shopify http://shopify.com/tapes - Start your business today with the industry’s best business partner, Shopify. Sign up for your one-dollar-per-month trial today at Shopify.com/tapes http://shopify.com/tapes. Zenni http://zenni.com/podcast - If your glasses are overdue for a refresh, go to Zenni.com/podcast http://zenni.com/podcast and use code PODCAST15 for 15% off your first order. Alloy http://myalloy.com - Try the original estrogen-powered M4 skincare from Alloy. Visit myalloy.com http://myalloy.com and use code TAPES for $20 off your first order! See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

• 0:00Speaker 00

  At Humana, our Medicare Advantage plans are easy to understand and easy on your wallet. Like offering more benefits than you'd get from original Medicare alone, and including dental, vision, and hearing coverage in every plan. And the best part is, every plan has a $0 or low monthly plan premium, which makes it easier to save, too. So this Medicare planning season, plan well with Humana. Learn more at gethumana.com. Humana is a Medicare Advantage HMO and PPO organization with a Medicare contract. Enrollment in any Humana plan depends on contract renewal.

• 0:33Ky Dickens?

  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. However, the spiritual side of their lives

• 1:17Ky Dickens?

  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.

• 1:30Speaker 02

  Yeah.

• 1:31Ky Dickens?

  Okay.

• 1:31Speaker 02

  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.

• 2:11Ky Dickens?

  Mm-hmm.

• 2:12Speaker 02

  And she mentioned fatigue, which is just such a like 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 hyperventilating,

• 2:55Speaker 02

  where she was unable to exhale that CO2. And that was directly not related to lungs, but actual muscle weakness.

• 3:03Ky Dickens?

  Interesting.

• 3:04Speaker 02

  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.

• 3:46Speaker 02

  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.

• 4:10Speaker 03

  I do give a lot of direct questions.

• 4:13Speaker 02

  Yes, and direct answers.

• 4:15Ky Dickens?

  Do you remember this conversation, Soraya?

• 4:17Speaker 03

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

• 4:21Speaker 02

  She does have some memory issues.

• 4:23Speaker 03

  Yeah, I remember a little bit of it.

• 4:25Ky Dickens?

  Because you were 10 when you witnessed?

• 4:26Speaker 03

  I was, yeah, I was.

• 4:28Ky Dickens?

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

• 4:32Speaker 02

  We still did not have a diagnosis still.

• 4:35Speaker 03

  We did not get any answers for that.

• 4:36Speaker 02

  At that point, correct.

• 4:38Ky Dickens?

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

• 4:44Speaker 02

  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 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 because 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.

• 5:29Speaker 02

  And before I could really fully contemplate his nonverbals, I went ahead and said, yes. And Soraya just started wailing.

• 5:40Speaker 03

  And I was like, yeah, like, I'm gonna be confused and not specific age. You know them all.

• 5:46Speaker 02

  I didn't know.

• 5:48Ky Dickens?

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

• 5:52Speaker 02

  Yeah.

• 5:52Ky Dickens?

  But not, nowhere near the weight or gravity of that type of question. But where you're trying to communicate, you want to do the right thing, you have like seconds to decide.

• 5:59Speaker 02

  Right.

• 6:00Ky Dickens?

  You don't want to feel shady in front of your kid by like, oh.

• 6:02Speaker 02

  Right, exactly, 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.

• 6:24Speaker 03

  Because I care about honesty.

• 6:25Speaker 02

  Yes. But she wanted to remember the day because she knew that she would have a hard time if it was like, tell me next Tuesday, that, that, 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

• 6:52Speaker 03

  Yeah.

• 6:53Speaker 02

  We weren't ready for that.

• 6:54Speaker 03

  That was my instinct, unfortunately.

• 6:57Speaker 02

  And it's okay. It's okay.

• 6:58Ky Dickens?

  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

• 7:06Speaker 03

  Definitely.

• 7:07Ky Dickens?

  It's it's takes and it takes bravery to share.

• 7:10Speaker 03

  Definitely.

• 7:10Ky Dickens?

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

• 7:14Speaker 03

  Yeah.

• 7:14Speaker 02

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

• 7:24Speaker 03

  She still does.

• 7:25Speaker 02

  She still does. Um, 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

• 7:45Speaker 03

  Yeah, that was like the thought.

• 7:47Speaker 02

  That was her thought. Yeah.

• 7:49Ky Dickens?

  So that was, what, about four years ago?

• 7:52Speaker 03

  Yeah, four years ago.

• 7:53Speaker 02

  Yes. 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.

• 8:03Ky Dickens?

  Okay.

• 8:04Speaker 02

  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, stressed to Soraya is like, we're not going to get hung up on timelines because nobody knows.

• 8:18Ky Dickens?

  Yeah.

• 8:19Speaker 02

  So we're just doing the best we can.

• 8:22Ky Dickens?

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

• 8:31Speaker 02

  Totally.

• 8:32Ky Dickens?

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

• 8:51Speaker 02

  So I will say that I have always been a bit more open to things that are more existential.

• 9:04Speaker 02

  And I also, from being in the medical background, don't share that with anybody. Because I find it to be where

• 9:13Speaker 03

  It can spook people out.

• 9:15Speaker 02

  Spook people out, but then also be judged, or have people say that you're crazy, or try to challenge you.

• 9:22Speaker 03

  Yeah, I don't like to be challenged, but

• 9:24Speaker 02

  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 one.

• 9:46Speaker 03

  I love, I love science.

• 9:47Ky Dickens?

  Yeah, really good.

• 9:48Speaker 02

  Yes.

• 9:49Ky Dickens?

  Psychic medium to share with you guys.

• 9:50Speaker 02

  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,

• 10:32Speaker 02

  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.

• 10:58Speaker 03

  Yeah, I was worried about the reaction, I would say.

• 11:01Speaker 02

  Yeah, and she just felt so comfortable talking about it, that then I started asking the chaplain, "Do you hear stories like this?"

• 11:10Speaker 03

  Is this common?

• 11:11Speaker 02

  "Is this common?" And she would say, "Yes." But would not tell me more stories and I want to know more stories.

• 11:16Speaker 03

  Yes, because she's very like, kind of like, kind of like if you were studying like, what's this, what's how, what is this like?

• 11:23Speaker 02

  Well, 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

• 12:08Speaker 02

  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 weaken, 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.

• 12:52Ky Dickens?

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• 13:37Ky Dickens?

  I wear it with everything. It can be dressed up, it can be dressed down, it can be layered with other necklaces. I love it and you'll see it in a lot of our video podcasts. Find the fall pieces you'll reach for most at Quince. Download the Quince app for app exclusive offers or go to quince.com. Get free shipping on your order and 365 day returns. Now available in Canada and the UK too. And when Quince asks where you heard about them, let them know it was the telepathy tapes. It's the best way to support our show.

• 14:02Speaker 00

  At Humana, our Medicare Advantage plans are easy to understand and easy on your wallet. Like offering more benefits than you'd get from original Medicare alone. And including dental, vision and hearing coverage in every plan. And the best part is every plan has a $0 or low monthly plan premium, which makes it easier to save too. So this Medicare planning season, plan well with Humana. Learn more at gethumana.com. Humana is a Medicare Advantage, HMO and PPO organization with a Medicare contract. Enrollment in any Humana plan depends on contract renewal.

• 14:37Speaker 02

  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.

• 15:09Ky Dickens?

  You're so lucky your parents will talk to you about it. Cause could you imagine experiencing this and feeling like you couldn't talk about it?

• 15:15Speaker 03

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

• 15:23Ky Dickens?

  And you just talk to yourself.

• 15:24Speaker 03

  Yeah, I'm like, I'm telling myself about this.

• 15:27Ky Dickens?

  You'd have to get it out. You feel like you can talk to your sisters about it too, right?

• 15:30Speaker 03

  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.

• 15:47Speaker 03

  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 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 like crazy to me cause like, I was seeing it and it was a feeling that they were having and I was like, that's pretty interesting.

• 16:14Ky Dickens?

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

• 16:17Speaker 02

  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 are, 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

• 16:58Speaker 02

  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 that.

• 17:18Speaker 03

  Like, 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.

• 17:35Speaker 02

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

• 17:41Speaker 03

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

• 17:51Speaker 02

  And then this story, I think, is what. Kind of started the journey of 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.

• 18:22Speaker 03

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

• 18:27Speaker 02

  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.

• 18:47Speaker 03

  Yeah.

• 18:48Speaker 02

  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 this cat, her cat, which is her, we call it her spirit animal.

• 19:14Speaker 03

  Yeah.

• 19:14Speaker 02

  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.

• 19:36Speaker 03

  And light.

• 19:36Speaker 02

  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

• 19:48Speaker 03

  She's

• 19:48Speaker 02

  She's furious.

• 19:50Speaker 03

  Yeah.

• 19:51Speaker 02

  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, Yasmin, 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 are in her fears. And she is going through each person. And she's like, we are here for love.

• 20:35Speaker 02

  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 going to decide because 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 all day. I'm exhausted. I'm exhausted for everybody I'm trying to heal. I am trying to heal everybody. And it's so tiring.

• 21:15Speaker 02

  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.

• 21:29Ky Dickens?

  Wow. 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?

• 21:40Speaker 03

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

• 21:57Ky Dickens?

  Yeah.

• 21:58Speaker 03

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

• 22:06Ky Dickens?

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

• 22:10Speaker 03

  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.

• 22:34Ky Dickens?

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

• 22:38Speaker 02

  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 about, 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, like the next day, I'm like, do you remember that?

• 23:23Speaker 02

  She's like, yeah. Cause I'm like, was this like a transient state? Was she, 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.

• 23:37Ky Dickens?

  Right, right. Exactly.

• 23:39Speaker 02

  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,

• 24:12Ky Dickens?

  Different ways that they're doing it.

• 24:13Speaker 02

  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, 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 nonverbal 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?

• 24:58Speaker 02

  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.

• 25:10Ky Dickens?

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

• 25:14Speaker 03

  No.

• 25:16Speaker 02

  She's still like, yeah, like what's.

• 25:18Speaker 03

  I'm like, I will.

• 25:20Speaker 02

  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.

• 25:45Ky Dickens?

  Does that sound right, Soraya?

• 25:47Speaker 03

  My mom's wholly correct on the details.

• 25:50Ky Dickens?

  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 became? And so it sounds like other people come.

• 26:00Speaker 03

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

• 26:07Speaker 02

  Like now it's like all different, all different people.

• 26:11Speaker 03

  Yeah.

• 26:12Speaker 02

  It takes a little bit more.

• 26:13Speaker 03

  It takes more time because I have to like focus on what they're saying, focus what they're trying to do and all that.

• 26:21Ky Dickens?

  And can you see them or does it hear them? Like for you.

• 26:23Speaker 03

  I, I, I can see them, but I don't know what they like specifically look like or what they're wearing, but I can just hear by voice. And it kind of connects with like a little bit of like my brain can read it or just by hearing it. It, it's very different for me. Like it definitely.

• 26:51Speaker 03

  Has helped me and like when I talk about it, I'm like, I hope I'm not, I'm not spooking you out, but 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.

• 27:07Ky Dickens?

  And your mom said that at one point you've wanted more like

• 27:12Ky Dickens?

  I know it's really cool.

• 27:13Speaker 02

  I know.

• 27:14Ky Dickens?

  It's really cool.

• 27:15Speaker 02

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

• 27:18Speaker 03

  Yeah, my mom says a lot.

• 27:20Ky Dickens?

  There's a lot to be proud of.

• 27:23Ky Dickens?

  When you said that you wanted to kind of gain more information or like learn more, but what did that look like and like, were you able to meet, like what would I call like spiritual masters, I guess?

• 27:33Speaker 03

  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.

• 27:55Ky Dickens?

  Like who do you learn it from?

• 28:08Speaker 03

  I think I learned it from like my instincts and myself and how whatever have like whatever the spiritual it 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 like 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.

• 28:49Speaker 03

  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.

• 29:00Ky Dickens?

  Mm-hmm. So, it's so interesting, cause you're plugging into something, it sounds like.

• 29:06Speaker 03

  Yeah, I'm very like, in tuned.

• 29:09Speaker 02

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

• 29:32Speaker 03

  I could just read real people's emotions.

• 29:34Speaker 02

  Yes, 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, I don't know either, but I'm like, how do you, how do, how do you sense or know that I'm having a bad day? Or how can you tell that I'm stressed?

• 30:03Speaker 03

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

• 30:11Speaker 02

  What does that mean?

• 30:12Speaker 03

  Um, I think a very good example was when I first met one of my friends, her name's Quirney, like, from Ulta. 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.

• 30:32Speaker 02

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

• 30:41Speaker 03

  Yeah.

• 30:42Speaker 02

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

• 30:44Speaker 03

  I don't know this person, I don't know her life.

• 30:47Speaker 02

  And she is now eyeing this girl that she's sensing has had a bad day.

• 30:52Speaker 03

  And I just go up to her and I'm like, are you okay? She was like, well, I'm kind of being overwhelmed, cause I'm moving to a new apartment. And I was like, hey, can I give you a hug? And I get that person that hug, and I was like, we could be friends, you know, like, best friends, and you know, like. I'm here winning 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 depends on what I feel, but also like, is that the right person?

• 31:38Speaker 02

  And Courtney and you guys are still best friends.

• 31:41Speaker 03

  Still best friends. I still have her phone number.

• 31:43Speaker 02

  Yes, and Courtney actually, you know, shared later with me that she had um, 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 um carried on their friendship, so she would come over, spend time, they'd go to movies. Yeah, have lunch dates and you know Courtney's in her twenties. And um so maybe not a a typical friendship, but I think that.

• 32:09Speaker 03

  I have a lot of like adult friends.

• 32:11Speaker 02

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

• 32:26Speaker 03

  Yeah, one, one of them had a heart

• 32:29Speaker 02

  Condition.

• 32:30Speaker 03

  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.

• 32:41Speaker 02

  But do you know what she says?

• 32:42Speaker 03

  Yeah.

• 32:43Speaker 02

  I'm so glad I've met you Soraya, like you're.

• 32:46Speaker 03

  Yeah, she always says positive things about me.

• 32:49Speaker 02

  Yeah, like she, you helped prepare her for this life and now she's a part of our life.

• 32:54Speaker 03

  Definitely.

• 32:56Ky Dickens?

  It's a sweet story.

• 32:57Speaker 03

  Yeah.

• 32:58Ky Dickens?

  You and Courtney are lucky to have each other.

• 33:00Speaker 03

  Definitely.

• 33:01Ky Dickens?

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

• 33:04Speaker 03

  Yeah, definitely.

• 33:05Speaker 02

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

• 33:10Ky Dickens?

  I love it.

• 33:11Speaker 02

  And so it's like, she wants to be the voice for the underdog.

• 33:14Ky Dickens?

  Okay.

• 33:15Speaker 02

  And the underdog is anybody who has been. On the outside.

• 33:19Ky Dickens?

  Oh, yeah.

• 33:20Speaker 02

  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?

• 33:31Ky Dickens?

  Yeah.

• 33:31Speaker 02

  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.

• 33:40Ky Dickens?

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

• 33:54Speaker 02

  That's, that's it.

• 33:56Ky Dickens?

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

• 34:00Speaker 02

  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 did find out that she has a gene called tau K1. It's called T A O K one 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.

• 34:39Speaker 02

  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, she's kind of bummed about her genetic diagnosis. So it's, it, 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. Like, 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.

• 35:23Speaker 02

  But the research exists and the people are there. We just need the funds.

• 35:26Ky Dickens?

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

• 35:35Speaker 02

  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.

• 35:55Ky Dickens?

  Wow. And how much do you think would like help get this just?

• 35:58Speaker 02

  At 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.

• 36:15Ky Dickens?

  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?

• 36:28Speaker 02

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

• 36:34Ky Dickens?

  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.

• 36:47Speaker 02

  Thank you.

• 36:49Ky Dickens?

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

• 36:58Speaker 03

  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.

• 37:06Ky Dickens?

  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?

• 37:13Speaker 03

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

• 37:17Ky Dickens?

  And just come up and ask you?

• 37:19Speaker 03

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

• 37:26Ky Dickens?

  Yeah. Soraya, do you want to say anything to your sisters who might watch this?

• 37:31Speaker 03

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

• 37:38Ky Dickens?

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

• 37:45Speaker 02

  It could save, 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.

• 38:02Ky Dickens?

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

• 38:05Speaker 02

  Yes.

• 38:05Ky Dickens?

  So cool.

• 38:06Speaker 02

  Dr. Smita Yadoff.

• 38:08Ky Dickens?

  All right.

• 38:08Speaker 02

  She's wonderful.

• 38:09Ky Dickens?

  Dr. Smita.

• 38:10Speaker 02

  Yeah.

• 38:10Ky Dickens?

  We're coming for you. We're gonna make it happen.

• 38:12Speaker 02

  Thank you.

• 38:12Ky Dickens?

  Awesome. All right. Well, thank you for making the way, all the way from Cincinnati.

• 38:17Speaker 02

  Yeah.

• 38:19Ky 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 website at thetelepathytapes.com for more info on how to subscribe to our Backstage Pass. Thank you to my amazing collaborators.

• 39:02Ky Dickens?

  Producers Katherine Ellis and Selena Kennedy, technical directing, audio mix and finishing by Jeremy Cole, opening and closing music by Elizabeth P. W., and original logo and cover art by Ben Condor Design. I'm Kai Dickens, your executive producer, writer, and host.