S2E35: Soraya's Story Part One

The Telepathy Tapes - Ky Dickens

Soraya, a 13-year-old disability advocate, shares her journey with an undiagnosed condition and profound spiritual experiences. Her family recounts medical struggles, emotional challenges, and transformative encounters w

Key takeaways

• Undiagnosed condition led to lifelong therapies

Transcript preview

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In this series we explore the threads that we've 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 of this episode on the Telepathy Tapes YouTube page. Today we have Tasha and Safi and their daughter, Soraya. Soraya is a proud disability advocate and for most of her life she's been struggling through an undiagnosed condition. It's been very difficult for their family and today we're going to talk about their journey and Suraya's incredible experiences with the other side in the non-physical world that has really changed what her family believes is possible. So right now on the couch we have, we have And later we'll bring in Safi, Soraya's dad. This is your moment to say whatever you want into the world. So, oh, no. So why don't we first start by just introducing both of you? For you, like what grade do you in or how old you are, where you live, where you're from, who's in your family? Just a quick intro. Okay. My name is Soraya and I am 13 years old and I'm in what grade? You're in eighth grade. what grade I'm in. That's okay. And I'm Tasha. I'm Soraya's mom. I'm a mom to three girls. So Soraya's a middle sister. She's got an older sister who's 16, a younger sister who's 11. I am also a pediatrician and book author. And your husband's a doctor as well, correct? Yes, he is an orthoped a surgeon. Yes. Wow. And when you walked in today, let me restate that. When you rolled in today, you had a very cool sign on the back, you had a wheelchair. Can you tell me what your sign said and why you put it there? Okay, so since I have like social anxiety and people stare or they say, look, that's a wheelchair, my son's like if you have any questions about like my disability or my wheelchair, ask me and like I've been asked those questions and so I was like, like I just did not want to go out of the car because of social anxiety. and kind of stuff that made me kind of think that and I was like literally telling my mom was like please write it down I can't not leave this card because I just can't do it I just can't I have social anxiety too I think a lot of us do right it's hard being in a new place or new people definitely because like I'm quite sometimes and then I talk a lot it just kind it depends yeah awesome so let's talk a little bit about your history Maybe Tasha tell us about when Soraya was born. Yes. And maybe we can talk a little bit about like your journey, like growing up, what you wanted to be, you know, what you wanted to do, like what your dreams were, and then how and when the diagnosis came into play and how that affected you and your family. Yes, and I can tell some of the history and just for those that are listening sometimes it takes a lot for Soraya to talk and as... Yeah, we're gonna go back and forth. Yeah, and it is. Yeah, and it is never to cut sometimes gets tired just from talking. And so when she was born, we actually were not aware that she was going to have any medical issues or any additional needs. But when she was born, she was born smaller than we expected. And so that was a surprise, mostly because I'm a pediatrician, and so I felt pretty hyper-vigilant about all of the things that I was putting into my body, everything. And so when she was born smaller than her sister, it raised a little bit of a concern for me. It was very much quickly reassured that it was just in my head, just overthinking things. And I also felt like when I breastfed that she got tired really easily. And again, it was kind of quickly reassured. You just graduated, you're overthinking this. She's fine. Fast forward to the two month appointment of her well child visit. I could not get her to take a bottle and I had to go back to work full time. And I brought this up to the pediatrician. And at that time, she's like, you're just like, you're just like, good at breastfeeding, she's not going to starve herself when you have to take her to daycare. So fast forward, four month appointment now. I've been back at work for a month and my 10 hour work days, she's being forced fed one ounce by the daycare at workers and I'm nursing her throughout the night. We get to the appointment and she is what we call failure to thrive. She is not gaining weight and I am feeling like many mothers like I'm not doing enough and this is my fault and so I'm told. four months go ahead and feed her solid food and as a pediatrician you know we say you can give food at four months but I felt like she wasn't like strong enough and wasn't ready but at that point he just was like do what you're what you're told I surrendered I'm like fine I will do it and so we gave her solid food I don't know what about it made me want to record it it's almost like I knew it wasn't going to go well and I recorded it and she was sweating and she was sweating and she started making And that noise is actually called Strider. And at that point it was my like stopping point where I recorded it I sent it to the pediatrician and I said I want a swallow study ordered. Granted I had no idea what I was looking for but I just like knew that like there was something I was like I know there's something going on and at five months when she did the swallow study it was shown that she was aspirating which just means that it's going down into her lungs versus her stomach. That in itself to a lot of red flags because now we have a child that's not gaining weight that is sweating with feeds feeding difficulties and aspirating and it sets off a whole bunch of what diagnosis is this so it went from nobody being concerned to we actually think she has some rare condition that could actually shorten her life and the first thing they thought it was was something called Spidal muscular atrophy which at that time there was not a cure for and so they were actually preparing us that she would pass away in the first year of life. We were stationed out in Virginia at that time. My husband's former military and he had just gotten his orders to serve in Afghanistan. And so we were meeting with genetic counselors, meeting with everybody like, okay, are you going to try to have another child if Soraya passes away and all these questions like, we went from nothing to everything and we got in for a lot of testing. The SMA testing was negative. Then they looked for other diseases, adrenalukot dystrophy, Rhett Syndrome, Zellweggers Disease, disorders of neurotransmitters, all of these things that I had briefly learned about for my board exams that I knew were all bad and they were all negative, which was great. However, as two physicians trying to navigate life, we wanted to really try to fix this. And it became very evident after a three-year journey of looking for every type of testing that was coming back inconclusive that was coming back inconclusive. we were likely not going to have an answer, but even more so than not having a diagnosis realizing that this wasn't going away. Her treatment really was therapies, speech, OT, physical therapy. We had nine sub-specialists at that time because we knew every system of her body was impacted, but she was making enough progress where we had no signs that her life was going to be limited, but we also had no signs that this was going away. How was she eating at that time? to cut you off? No, she ended up getting a G-tube at seven months of age and she still has one today. So she, this is a part of her that we absolutely love the G-tube in the sense of it's kept her alive. Like literally everyone asks me like can you eat food. Yes I can eat food. Yeah I think a lot of times it's almost like the wheelchair where people see you in a wheelchair and they assume that you cannot walk if you have a wheelchair and they see you with the G-to that you must not be able to eat at all. there's a nice mix. So up until age three we had gone on this Odyssey and then we actually got to a place of acceptance where all right she has something but she's doing well it's time to create some new dreams and we ended up moving to Cincinnati from where we were stationed in Virginia because they have one of the best children's hospitals and it's actually where I trained for my residency and so it was that nice comfort of being back in the Midwest. And we knew that they were used to seeing the zebras and what I mean by that is the rare. We wanted to be surrounded by people that were interested in cutting edge science research therapies and there we landed and we planned on this life where Soraya may live with us forever and or she may not or she may work at the mall. We knew that she would do something in customer service. You wanted to do lots of things I feel. Yeah. say like I might be living for a long time. Yeah, we'd help that stays that way for the rest of my life, but yes. You never know if the unexpected is gonna come in. So Soraya, what do you want to be when you grow up? Okay, I think it was a like I was kind of more of a figuring out what I want, what's my life's lifestyle. And I was like, well, let's see. I was like a lot of jobs I was thinking, maybe I should have three jobs, maybe. That's pretty typical in today's society. I was like, you know what, let's just do something. Because I just, I like to be that in a bicious kind of person. I was like, you know what, you know what, name it up with a hair stylus