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SEASON 2 DA CREW PODCAST_ BONUS EPISODE _ HOST BLAQUE DIAMOND · DA CREW Podcast

0:21
Speaker 1: All at Wings of Transformation Publishing. We are committed to
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Speaker 1: helping our authors reach their goals and pursue their dreams
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Speaker 1: of becoming published authors. We work closely with each author
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Speaker 1: of twenty twenty by Queen Angela.
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Speaker 2: Get featured.
1:30
Speaker 3: Hey, ho, hey, and.
1:31
Speaker 4: Welcome to another episode of the Proof podcast. I am
1:34
Speaker 4: your visionary Queen Angela. And if you are a diva
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Speaker 4: that's looking to amplify your voice and you're looking for
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Speaker 4: a whole we have faith for you. Come on over
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Speaker 4: and join Jim Diva Up yeahewey and amplify your voice.
1:55
Speaker 4: Basic Black after Dawn Doll Loo Podcast with your host
2:02
Speaker 4: Black Diamond.
2:58
Speaker 2: Hey, everybody, this is Black Diamond from the Crew Network
3:01
Speaker 2: and you're listening to Basic Black After Dark Podcasts should
3:05
Speaker 2: that meet you where you are and give you what
3:07
Speaker 2: you ask for. You know, growing up, some of us
3:11
Speaker 2: had physical symptoms such such as pimples. Would you show
3:15
Speaker 2: up at the wrong time and in the wrong place,
3:17
Speaker 2: like maybe the tip of the nose, especially if you
3:19
Speaker 2: get a dat or something, or wait for the two
3:22
Speaker 2: Fairy to put money under your pillow, or the chicken
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Speaker 2: pox which was nothing to scratch about. All of that
3:29
Speaker 2: is part of growing up, and tonight we are talking
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Speaker 2: about another physical symptom that affects children and newborns in continentia.
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Speaker 2: Pig minty, also known as Block Sutsberger syndrome, a red
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Speaker 2: genetic disorder that may that my guest knows all too
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Speaker 2: well about. She's here to educate and discuss her new
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Speaker 2: children's book, My Journey with Incontinential Big Minty. Please welcome
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Speaker 2: to Basic Black After Dark Fearing Metthlumore.
4:03
Speaker 5: Hello, how are you doing?
4:05
Speaker 2: I'm fine?
4:05
Speaker 6: How are you?
4:07
Speaker 5: I'm wonderful. Thank you so much for having me.
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Speaker 2: Thank you for bringing this to our attention. Because I'm
4:15
Speaker 2: gonna be honest. I've heard about certain things, have many children.
4:20
Speaker 2: I ain't gonna go byominy of them, But never had
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Speaker 2: I ever come across in continential pigmenting. Like I said,
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Speaker 2: everything else, box, mesus, mumps, all of that, But never
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Speaker 2: have I come across that. What made you write a
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Speaker 2: children's book about a real genetic disorder such as IP
4:38
Speaker 2: I'll call it?
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Speaker 7: So I wrote this book to share the story of
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Speaker 7: my daughter, My daughter Camaiya, who is known as Maya
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Speaker 7: in the book. She was born with this rare genetic
4:51
Speaker 7: disorder or condition some may call it. She's been my
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Speaker 7: inspiration since the very beginning. So through her journey with
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Speaker 7: this rare condition, I've learned so much about resilience, self love,
5:02
Speaker 7: and the power of embracing our own differences. So I
5:05
Speaker 7: wanted to write a book that taught the importance of
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Speaker 7: self love and just to encourage anybody who's facing similar
5:12
Speaker 7: challenges that there's light even in the darkest moments.
5:17
Speaker 2: Wow, it took a lot of courage to to even
5:21
Speaker 2: write such a book, and knowing that your daughter and
5:24
Speaker 2: your family is living with this because I don't say
5:27
Speaker 2: have it, I'll say living with it, and it's definitely
5:30
Speaker 2: not a welcome guest. So I typically it presents itself
5:34
Speaker 2: in four stages of the skin. You know how the
5:36
Speaker 2: skin changes. What are those stages?
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Speaker 7: So the first stage is the blistering stage, and that
5:43
Speaker 7: the blisters start at birth or just shortly after, so
5:49
Speaker 7: that can that so I call it blistering, but the
5:51
Speaker 7: it could also be it can also be called a
5:54
Speaker 7: secular but it's also known as blistering. The second stage
6:00
Speaker 7: is ward like, and that's thickened wardy legions that pop
6:06
Speaker 7: up above the skin. Those can be like sores, which
6:11
Speaker 7: can be painful to the third stage is hyper pigmented,
6:18
Speaker 7: which is dark brown patches that follow skin lines, So
6:23
Speaker 7: those you might not have the ward like, You might
6:26
Speaker 7: just have those dark patches that kind of have like
6:29
Speaker 7: a I call like a swirl patch. And then the
6:33
Speaker 7: last stage is a tropic hyper pigmented that's pale, thinned
6:39
Speaker 7: or wrinkled areas of the skin. So these stages typically
6:43
Speaker 7: follow one another, though every person might not experience all
6:47
Speaker 7: the stages. Some may overlap. But in these skin changes,
6:52
Speaker 7: they're not life threatening. But depending on what stages you
6:56
Speaker 7: are in, you just you know, go to dermatologists who
7:02
Speaker 7: recommend how to treat them. So like for my daughter,
7:06
Speaker 7: it was moisturized, keeping them moisturized.
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Speaker 2: Okay, okay, so does it, does it crack or anything
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Speaker 2: like that or burn? Does she ever say that it
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Speaker 2: cracks or burns?
7:17
Speaker 7: So it has cracked, not burn. But it's just like
7:22
Speaker 7: a sowre, you know how sore starts and then it
7:24
Speaker 7: starts to heal and then you have like the top layer,
7:28
Speaker 7: so it's cracked before. But again with we learned for
7:32
Speaker 7: her just keeping them moisturized and possibly covering it sometimes too,
7:37
Speaker 7: because you know, they're lifted on the skin and you
7:40
Speaker 7: know kids like to play, so they're playing and hid
7:43
Speaker 7: it or you know, knock it off. Then there's going
7:46
Speaker 7: to be some bleeding like a normal sore.
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Speaker 2: Okay, are they any challenges to the central nervous system
7:53
Speaker 2: with it?
7:55
Speaker 7: Yes, So there is about twenty percent of kids that.
8:00
Speaker 5: Get the central nervous system part of it.
8:02
Speaker 7: So I learned actually recently that this condition is mild
8:07
Speaker 7: to severe. I actually met someone who has the mild
8:10
Speaker 7: version of it, and she doesn't have the neurological part
8:14
Speaker 7: of it. So my daughter has the severe part of it.
8:17
Speaker 7: So she experienced all four stages of the skin part.
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Speaker 2: Oh my god, Oh my god. This conditions it's exce
8:31
Speaker 2: linked and it's dominant and you're saying your daughter does
8:33
Speaker 2: it have more of an effect on females who have
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Speaker 2: two chromosomes, the X chromosomes on males who carry both
8:40
Speaker 2: the X and the Y chromosomes.
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Speaker 7: So, with IP being excellent dominant, it affects males and
8:48
Speaker 7: females differently due to the way that the mutation is
8:51
Speaker 7: carried on the X chromosome. So females they have two
8:55
Speaker 7: X chromosomes, they're typically more mildly, mildly loudly affected by IP,
9:02
Speaker 7: and that is because they have one normal X chromosome
9:06
Speaker 7: that can't compensate or at least partially for the muted.
9:10
Speaker 7: So the gene is called i k B KGG. That's
9:15
Speaker 7: the gene that's mutated and affected that is on the
9:19
Speaker 7: X chromosome. So for males, the males only have one.
9:24
Speaker 7: They have one X chromosome and one Y chromosome, so
9:28
Speaker 7: that's why it's far more severely in males if they
9:32
Speaker 7: inherit the mutation. So without a second X chromosome to compensate,
9:38
Speaker 7: the mutation tends to be lethal in most cases, and
9:42
Speaker 7: male fetuses with IP often do not survive or miscarriage
9:46
Speaker 7: is common.
9:48
Speaker 2: Yeah, I was just about to ask how does this
9:50
Speaker 2: affect pregnancies if the woman learns she's a carrier or
9:54
Speaker 2: do she learn that she's a carrier and is their
9:56
Speaker 2: genetic testing during pregnancy.
10:00
Speaker 7: So women who carry the ipgene mutation, they have a
10:03
Speaker 7: higher risk of miscarriages. So, especially if the fetus is
10:06
Speaker 7: a male and the male inherences the mutation, they have
10:11
Speaker 7: to undergo that genetic counseling and that prenatal testing. So
10:15
Speaker 7: they'll do the I think it's called m aminosis. I'm saying,
10:21
Speaker 7: all right, aminosynthesis, and that's when they put the needle,
10:25
Speaker 7: you know, through the ambiotic fude into yes, that's thank you,
10:31
Speaker 7: or they do the uh these big words. But the
10:37
Speaker 7: UH core choronotic villis sampling to determine whether the phetis
10:44
Speaker 7: was inherited the mutation. So it's essential for women who
10:48
Speaker 7: carries this gene to work closely with genetic counselor and
10:52
Speaker 7: the maternal feudal medicine specialists to manage the pregnancies and
10:56
Speaker 7: assess what the risk could be.
10:59
Speaker 2: So yes saying that the female which is the mother,
11:02
Speaker 2: carries it, so the father will not be able to
11:05
Speaker 2: transfer it to the daughter.
11:10
Speaker 7: It's really it's really rare that they do, but it's possible.
11:16
Speaker 2: Now. Something came to me just now, and it's something
11:19
Speaker 2: that I've seen on TV, and I guess it does
11:21
Speaker 2: happen in real life where people are born. Say a
11:27
Speaker 2: person is born with what on the outside looks like male,
11:33
Speaker 2: like a male, but on the inside it has the
11:35
Speaker 2: female body parts, you know, things that the female would have.
11:40
Speaker 2: M I'm wondering if they would be carrying the two
11:45
Speaker 2: chromosomes two X chromosomes, or would they have the X y.
11:49
Speaker 2: And if they had the two X but they look
11:52
Speaker 2: like the male, how would that affect them. I guess
11:55
Speaker 2: that just takes me so far, but that's just the
11:57
Speaker 2: way that I think sometimes. I'm sorry, it just takes
12:00
Speaker 2: me dare because this this just learning about it and
12:04
Speaker 2: wanting to delve into it and just wanting to know
12:06
Speaker 2: more about it. I can be sitting there for hours
12:08
Speaker 2: with you, and if they allow me to, I probably would.
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Speaker 2: But this just came to me, just like what happens
12:14
Speaker 2: in a case like that. You may not have the
12:15
Speaker 2: answer for it right now, but I'm gonna even look
12:19
Speaker 2: that up myself just to figure out, you know, what
12:21
Speaker 2: would happen if that was the case, what is the
12:25
Speaker 2: survival rate for a newborn?
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Speaker 7: So the survivor rate of newborns with IP generally is
12:33
Speaker 7: favorable for females, who make up the vast majority of
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Speaker 7: the affected individuals. However, for male feenuses, the survival rate
12:44
Speaker 7: is significantly lower due to the genetic nature of the disorder.
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Speaker 7: So again, sins the males only have one X chromosome,
12:53
Speaker 7: there are much more severely affected if they inherit the
12:57
Speaker 7: new Tanta genes since of male do not have that
13:00
Speaker 7: chromosome to compensate for the mutation.
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Speaker 5: So most males.
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Speaker 2: No, go ahead, go ahead.
13:08
Speaker 7: Yeah, So most males they do not survive, and if
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Speaker 7: they do survive, they have the condition more severely then
13:17
Speaker 7: you know a female.
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Speaker 2: Yeah, that's that's what I was going to ask for
13:21
Speaker 2: the new one to survive. Are there less severe mutations
13:24
Speaker 2: or do they have to wait and see, you know,
13:27
Speaker 2: to see how the mutations was.
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Speaker 7: Yeah, they usually have it more severe. So I know
13:34
Speaker 7: that I've heard that they could be blind because of it.
13:38
Speaker 7: The legions and the four stages of the skin process
13:41
Speaker 7: that we talked about that could be more severe. So
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Speaker 7: for my daughter, it was on both sides of her body,
13:46
Speaker 7: but the left side cleared up and then it was
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Speaker 7: just strictly.
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Speaker 5: On the right side.
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Speaker 7: So even now, if you seen her, you would see
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Speaker 7: those patches where those leasures were that have healed, and
14:00
Speaker 7: even the wrinkle. And she's nine years old, so you
14:03
Speaker 7: can still see that on her squat skin, and she
14:06
Speaker 7: has the swirl like patches that started from birth. That change,
14:10
Speaker 7: of course as she's gonna grow into adulthood, but you'll
14:14
Speaker 7: still see that because it is a skin condition. But
14:17
Speaker 7: there are other parts of the body that are impacted.
14:21
Speaker 2: So with that being a genetic disorder IP, they more
14:27
Speaker 2: so gave it a name as a genetic disorder rather
14:30
Speaker 2: than a disease or illkness. Yes, wow, is there a
14:37
Speaker 2: cure or a focus of treatment for this disorder?
14:41
Speaker 7: I'm sorry, No, there's not a cure. There's not a
14:45
Speaker 7: cue for it, but there is a focus a treatment.
14:49
Speaker 7: So again, it depends on the severity of the symptoms
14:53
Speaker 7: that you have. So for my daughter, obviously the skin
14:57
Speaker 7: part of it, you know, we had we took her
14:59
Speaker 7: to atologists where they gave us this special cream that
15:04
Speaker 7: would keep her skin moisturized, that would you know, prevent
15:08
Speaker 7: the soreness of the legions and then also the neurological monitory.
15:14
Speaker 7: So the condition can cause seizures or developmental delays, so
15:19
Speaker 7: you you know, you're gonna have to get your neurologist
15:22
Speaker 7: who is going to monitor those seizures. So my daughter
15:26
Speaker 7: has had a total of three seizures. She's on a
15:29
Speaker 7: seizure medication because of it. She has a developmental delays,
15:34
Speaker 7: so she has a IEP in school where she gets
15:37
Speaker 7: that additional help. There's also occupational therapy and speech therapy
15:43
Speaker 7: that they recommend as well, and that's just to you know,
15:47
Speaker 7: help them with their development. It also can create vision problems,
15:52
Speaker 7: so she wears glasses because you can have eye issues
15:56
Speaker 7: such as retina detachment, cataracts, or just vision, abnormal teeth.
16:01
Speaker 7: But luckily for her, she was born with pale retinas,
16:06
Speaker 7: which it was a concern at first, but again just
16:10
Speaker 7: you know, growing, it's been much better. So she does
16:13
Speaker 7: wear glasses, but her vision is improving each check up.
16:19
Speaker 7: And then another part of it is the dental care.
16:21
Speaker 7: So you have the teeth, abnormal teeth which you have
16:25
Speaker 7: missing teeth or peg shaped teeth. So my daughter, again
16:30
Speaker 7: she's nine, she does not have all of her teeth
16:32
Speaker 7: and she has the peg shape of the teeth. So
16:35
Speaker 7: down the line, we're gonna have to visit, you know,
16:39
Speaker 7: in plants or braces just to you know, correct you know,
16:44
Speaker 7: her smile if we need to. And then the hair
16:47
Speaker 7: and nails, so your hair you can have alopecia with it,
16:51
Speaker 7: and then your nails, and your nail can be pitted
16:54
Speaker 7: so kind of like you know how you can see
16:56
Speaker 7: some people's fingernails kind.
16:57
Speaker 5: Of like a lift, like a like do you want
17:01
Speaker 5: to call it that?
17:03
Speaker 7: And that's just you know, you can have cosmetic solutions
17:08
Speaker 7: if needed, or dermatologists to help you with that as well.
17:16
Speaker 2: With her classmates and friends and what because sometimes kids
17:20
Speaker 2: can be cruel. But then sometimes kids are amazing. You know,
17:24
Speaker 2: they're they're better than adult adults. Behave you know, much
17:29
Speaker 2: better than adults, because some adults would I don't even
17:31
Speaker 2: want to say they would go with it because I
17:33
Speaker 2: know where they can go with that. But how how
17:36
Speaker 2: is her how is her friendship in school with her classmates?
17:40
Speaker 5: You know what?
17:43
Speaker 7: So she's a natural nurturer, so she's she has the
17:47
Speaker 7: biggest heart, and I love it. I actually had the
17:50
Speaker 7: privilege of going to her school and reading the book
17:52
Speaker 7: to her class, and that allowed them to understand her more.
18:00
Speaker 5: And I can't tell you how.
18:01
Speaker 7: Rewarding it was because she's in third grade and I
18:06
Speaker 7: it blew my mind how much they understood and the
18:10
Speaker 7: questions that they asked. Thankfully, we have not, you know,
18:15
Speaker 7: had any bullying or anything like that. But she's just
18:20
Speaker 7: huge on you know, if that's her friend, that's her friend.
18:25
Speaker 7: She gets along with everybody, so that we haven't experienced
18:30
Speaker 7: any major issues. And I think, you know, writing the
18:35
Speaker 7: book and sharing gives them just a huge insight on
18:40
Speaker 7: how to help care for her. And they just they
18:43
Speaker 7: now they really clean to her. They're like, oh, Clia,
18:47
Speaker 7: you know, and it's just it's amazing. Yeah, yeah, just
18:52
Speaker 7: to see you know, even they don't one hundred percent understand,
18:56
Speaker 7: but they still you know, acknowledge it and they still
18:59
Speaker 7: understand and at their level.
19:02
Speaker 2: Wow, when is you know what? I'm not even going
19:05
Speaker 2: to ask that question as I don't even want to
19:11
Speaker 2: think about it, so I'll just move on. Are there
19:13
Speaker 2: geographic factors tied to IP or prevalence to ethnicity with IP?
19:20
Speaker 7: So IP does not appear to have to be tied
19:23
Speaker 7: to any specific geographic region or ethnicity. The condition is
19:28
Speaker 7: extremely rare and the primarily results from the mutation is
19:33
Speaker 7: in that I be KG gene on the X chromosol.
19:38
Speaker 7: So since it is a genetic disorder, its occurrence is
19:42
Speaker 7: more related to individual or family genetic mutations rather than
19:48
Speaker 7: environmental or geographic factors.
19:52
Speaker 2: Oh wow, Well, you know what, We're going to take
19:56
Speaker 2: a commercial break and when we return, we're going to
19:59
Speaker 2: delve into fairancy new book, which is what we've been
20:02
Speaker 2: talking about. But we've been talking more so about the diagnosis,
20:06
Speaker 2: but we're gonna talk more about her new book, Shining
20:08
Speaker 2: Through My Journey with Pigment. That's a lesson beat turn off,
20:32
Speaker 2: the legs the light, I can tonight on.
20:43
Speaker 3: Then I'm imagine, let's take a shower shower together.
20:58
Speaker 8: I watch him by so much wealth day, same.
21:20
Speaker 1: Turn off.
21:30
Speaker 8: You're all I want to give you a special tweet.
21:33
Speaker 8: You're so sweet.
21:36
Speaker 1: Turn on.
21:41
Speaker 2: Wow, welcome back. We are here with Farren maclamore, the
21:45
Speaker 2: author of Shining Through My Journey with Incontinuia PIGMENTI i P.
21:51
Speaker 2: During the first half of the show, I learned about
21:53
Speaker 2: the genetic disorder I P, and I hope you did
21:56
Speaker 2: as well, shining through my n with IP. Many authors
22:03
Speaker 2: right to educate, to get something au their chest, self help,
22:06
Speaker 2: or to create and maintain relationships with people around the world.
22:10
Speaker 2: What was your purpose in writing about IP? Now I
22:13
Speaker 2: understand that your daughter's living within your family as well,
22:17
Speaker 2: but what was your purpose?
22:20
Speaker 7: So writing about IP serves multiple purposes, raising awareness, providing support,
22:27
Speaker 7: promoting self acceptance, and fostering empathy and inclusivity. It can
22:34
Speaker 7: empower those affected by IP, educate others, and create more
22:39
Speaker 7: and more compassion in society. So through my book, I'm
22:44
Speaker 7: not only telling a story, but also advocating for a
22:47
Speaker 7: war where differences are celebrated and everyone's journey is honored.
22:54
Speaker 2: Perfectly said, perfectly said. And congratulations to you on this
23:00
Speaker 2: because this is your first book.
23:02
Speaker 5: This is my first book.
23:03
Speaker 2: Yes, oh wow, what a wonderful way to start off
23:06
Speaker 2: being an author, writing about something that means a lot
23:10
Speaker 2: to you, and that it means a lot to those
23:13
Speaker 2: who have family members that's also living with IP as well.
23:17
Speaker 2: This children's book, it tells the story of a brave
23:20
Speaker 2: eight year old who's now nine, named Maya, who is
23:24
Speaker 2: living with IP and the way it has affected her life,
23:27
Speaker 2: And what way can IP affect the life of someone
23:30
Speaker 2: like your daughter, a little girl who would rather play
23:32
Speaker 2: with dolls instead of getting genetically tested on a regular basis.
23:36
Speaker 2: Because there's different things that comes up all the time,
23:41
Speaker 2: and as she gets older, there's different things that's going
23:46
Speaker 2: to change within her. So how is it going to
23:51
Speaker 2: affect her life? They have they prepared you for that?
23:53
Speaker 2: Have they told you why she gets a certain age
23:55
Speaker 2: that she may be going through this or it may
23:59
Speaker 2: it can get better her, you know as she as
24:01
Speaker 2: she's aging mm hm.
24:04
Speaker 7: So so as I mentioned before, you know it is
24:07
Speaker 7: you know, a female dominant condition or disorder, and she
24:12
Speaker 7: will live a normal life just with you know, the
24:15
Speaker 7: different things that we have in place for her. Someone
24:20
Speaker 7: like Camaya who has it severely. She's a routine child,
24:24
Speaker 7: which is good because you know, we do the same things.
24:27
Speaker 7: She actually gets excited about her appointments now because you know,
24:33
Speaker 7: communication goes a long way with her. If you prepare
24:36
Speaker 7: her for things, then it's easier for her to do that.
24:41
Speaker 7: So she pretty much you know, she still gets to
24:44
Speaker 7: be a normal kid and she still gets to play
24:46
Speaker 7: with her do she she'll take the downs to the appointment,
24:48
Speaker 7: you know, whatever makes her comfortable.
24:50
Speaker 5: But just what we've.
24:56
Speaker 7: Let's just I won't say it's gotten easier, Okay, it's
24:59
Speaker 7: just gotten more manageable with the support that we were
25:02
Speaker 7: able to put in place for her. So you know,
25:05
Speaker 7: those that speech therapists, that genetic doctor, that neurologists, you know,
25:11
Speaker 7: we just learned to put that support system together which
25:15
Speaker 7: helps us navigate. And then every year there's that testing
25:19
Speaker 7: that we update, right, we update to make sure that
25:23
Speaker 7: what we do have in place for her is working.
25:26
Speaker 7: We just did another update. So this testing was her
25:30
Speaker 7: last seizure where it crushed her memory, and so we
25:35
Speaker 7: did an updated testing two years later which her memory
25:40
Speaker 7: is strong.
25:41
Speaker 5: So it's just so yeah, that's.
25:45
Speaker 7: You know, I'm so grateful to God because we all
25:48
Speaker 7: we look for progress, right as long as we're seeing
25:51
Speaker 7: progress even in school, how she's learning, even her confidence
25:56
Speaker 7: is increasing. So someone who might have a mild version
26:02
Speaker 7: of it or not the you know, the neurological part
26:05
Speaker 7: of it, it might affect them a little bit more
26:08
Speaker 7: because you know, they don't you know, have that the
26:13
Speaker 7: developmental delay or that understanding piece of it. So with Kamaiya,
26:18
Speaker 7: she learns by a repetition and review. So we have
26:23
Speaker 7: to learn how to break things down for her. So
26:26
Speaker 7: having a conversation like you and I, we can do that,
26:29
Speaker 7: but it depends on how you say things that she
26:33
Speaker 7: will be like, I don't know what that means. But
26:37
Speaker 7: so it just really depends on, you know, the severity
26:40
Speaker 7: of the condition on how it would affect you. With her,
26:44
Speaker 7: she just kind of go with the flow, you know, Kamaia,
26:46
Speaker 7: you have an appointment today, You're gonna do an EEG.
26:49
Speaker 7: She has done enough of them so she knows what
26:51
Speaker 7: to expect. You're gonna do an MRI today. Remember, and
26:55
Speaker 7: I just kind of you know, talk her through. Remember
26:57
Speaker 7: they're gonna put you in the machine. I'll be there
26:59
Speaker 7: right with you, ading right next to you, so you
27:01
Speaker 7: don't have to be scared. I'm going to be there.
27:03
Speaker 7: So those type of things with her is just you know,
27:06
Speaker 7: it's just that simple conversation with her that kind of
27:10
Speaker 7: helps her stay calm in those situations.
27:15
Speaker 2: Wow, you should be applauded. We had some messages in
27:18
Speaker 2: there before we went to commercial break.
27:20
Speaker 4: D D.
27:20
Speaker 2: Wright had said about it. Basically, adults can be too much,
27:25
Speaker 2: you know when when they don't know what to say,
27:27
Speaker 2: and they and the things that they say they shouldn't say.
27:30
Speaker 2: And then I think why hamas said that, Oh DEDI
27:34
Speaker 2: again saying that's a blessing. If kids learned earlier, they
27:37
Speaker 2: are more accepted. And most of the time it's the
27:39
Speaker 2: adults that that do too much. And yes they do.
27:42
Speaker 2: They overreact and just about everything. That is because adults
27:46
Speaker 2: are like the kids, you know, when it comes to
27:49
Speaker 2: certain things, they don't know, they don't they don't accept
27:54
Speaker 2: what to accept. You know why Hama said, amen to
27:58
Speaker 2: to with's the way that your daughter is accepting it all.
28:01
Speaker 2: And again applauds to you and your husband for just
28:07
Speaker 2: breaking it through and for you for writing this book
28:10
Speaker 2: and bringing awareness to everyone. You mentioned several times I
28:16
Speaker 2: k b KG by identify immutations in the I k
28:20
Speaker 2: b KG, which is actually the inhibitant of nuclear factor
28:24
Speaker 2: kappa B konasy gamma. See I'm learning too. It's a
28:32
Speaker 2: gene which plays a role in regulating the immune system.
28:36
Speaker 2: How does it How is it compared to MS multiple
28:39
Speaker 2: sclerosis since they are both disorders involving the nervous system,
28:44
Speaker 2: or does it compare at all?
28:47
Speaker 5: You know what I P and MS?
28:49
Speaker 7: There there are two very different conditions though they both
28:54
Speaker 7: affect the nervous system, but they have some overlapping symptoms
28:58
Speaker 7: in rare cases. So i P we know is a
29:01
Speaker 7: genetic disorder that is excellent dominant caused by the mutation,
29:06
Speaker 7: and that primarily affects the skin, the teeth, the eyes,
29:10
Speaker 7: and the central nervous system, and symptoms appear from birth
29:14
Speaker 7: and early emphasis. But we know that MS is an
29:17
Speaker 7: automat disease where the body's immune system is attacked, is
29:23
Speaker 7: attacked the protective covering of the nerve fibers in the
29:27
Speaker 7: brain and the spinal cord, so that disrupts the communication
29:31
Speaker 7: between the brain and the rest of the body.
29:34
Speaker 5: So they're.
29:36
Speaker 7: Similar, but not not similar, just because you know.
29:41
Speaker 2: Where that need to think. You know what if a
29:44
Speaker 2: person because they both affect the nervous system, what would
29:48
Speaker 2: happen both? You know how?
29:52
Speaker 7: Yeah, it's I would on nobody.
29:56
Speaker 2: That's what I'm saying. I'm just I'm just bus out
29:58
Speaker 2: in tears, just just and just thinking about it. You know. Yeah, Wow,
30:04
Speaker 2: this has been some night. We learn more from you, Yes, definitely,
30:08
Speaker 2: we learn more from you about IP than I believe
30:11
Speaker 2: I would have learned through a course or textbook, and again,
30:15
Speaker 2: thank you for bringing this read disorder to our attention
30:17
Speaker 2: and through a children's book. But why a children's book
30:20
Speaker 2: and not a self help book?
30:24
Speaker 7: So Shining through My Journey with in Continuity and Pignity
30:29
Speaker 7: is a children book because it primarily focuses on delivering
30:33
Speaker 7: a message of self love, embracing, embracing differences, and empowerment
30:40
Speaker 7: in a format that is accessible to add relatable to children.
30:45
Speaker 7: This story is designed for young readers, particularly children who
30:49
Speaker 7: are in the formative years of learning about self identity
30:53
Speaker 7: and acceptance. So by inducing by introducing these concepts early,
30:58
Speaker 7: the book helps children under stand that being different is
31:01
Speaker 7: okay and even can be a strength. My story, featuring
31:07
Speaker 7: a little girl with a rare skin condition, speaks directly
31:10
Speaker 7: to young readers who may feel different or isolated.
31:16
Speaker 2: So you gave us a specific message. What is the
31:18
Speaker 2: takeaway that you hope your readers gained from your book?
31:23
Speaker 7: So I want readers to take away from this book
31:25
Speaker 7: to never give up when having different abilities. I want
31:29
Speaker 7: readers to know that they possess the power to overcome
31:32
Speaker 7: any challenge that comes their way. Being different is not
31:36
Speaker 7: something to be ashamed of is something to be celebrated.
31:39
Speaker 7: Maya's uniqueness and individuality makes her shine brilliantly, setting her
31:45
Speaker 7: apart from the crowd. I want readers to embrace their differences,
31:49
Speaker 7: no matter the kind, and take pride in who they are.
31:56
Speaker 2: You seem like a spokesperson for this, you honestly do.
32:01
Speaker 2: How do you envision readers yet? But you well? Here
32:04
Speaker 2: tonight you are. I don't nobod any place else, but
32:07
Speaker 2: tonight you are. How do you envision readers connecting with
32:11
Speaker 2: your work? Because I want to push this out as
32:13
Speaker 2: much as I can. People gonna be that dagase she's
32:15
Speaker 2: tired of playing that same dag on podcast. No, No
32:18
Speaker 2: I'm not. It's not tell you get it, I'm not.
32:21
Speaker 2: I want to keep pushing it out there. You might
32:23
Speaker 2: start seeing weekly. You might hear it. You might start
32:26
Speaker 2: seeing it weekly. Because this is just so very important.
32:30
Speaker 2: You know, anything that any any family is dealing with,
32:36
Speaker 2: it's important. But this right here again, I would have
32:43
Speaker 2: never ever thought of anything. You know, dealing with the
32:47
Speaker 2: chicken pox is one thing when you go away. I
32:51
Speaker 2: remember my niece would bring home something that I was
32:55
Speaker 2: the one that always got chicken pox. Is thirteen years
32:58
Speaker 2: old and they called the ship thing. Try being a
33:00
Speaker 2: teenager with that, But could you imagine being an eight
33:03
Speaker 2: year old with living with IP. You know, we take
33:09
Speaker 2: so much for granted, you know, with certain things that
33:14
Speaker 2: you look at your children, you can be upset about
33:15
Speaker 2: certain things, or you you're not as smart as this person,
33:18
Speaker 2: or you're not doing that. Just being be grateful, you know,
33:22
Speaker 2: for those who are out there wanting your child to
33:24
Speaker 2: excel in so many different things that they probably just
33:26
Speaker 2: can't be that they just can't excel, and take take
33:29
Speaker 2: them for the take them for the things, value that
33:32
Speaker 2: you see in front of you, for who they are,
33:34
Speaker 2: and that they merely exist. You know, this book look
33:39
Speaker 2: like it should be also a coloring book or even
33:43
Speaker 2: a cartoon. The coloring book is see here, I am
33:49
Speaker 2: giving you that stuff, telling you what I've already had
33:53
Speaker 2: it on your list. And look because behind you looking
33:56
Speaker 2: at it, and it just it looks like it can
33:59
Speaker 2: also be a coloring book and a whole bunch of
34:02
Speaker 2: other educational things. And when I say educational the coloring book,
34:06
Speaker 2: they're adult coloring books too, because the notes can learn
34:09
Speaker 2: from this, you know, and they can use it for
34:13
Speaker 2: other other channels and other avenues that they may want
34:16
Speaker 2: to go up. You know, have have any reader responds surprised?
34:22
Speaker 5: You you know what?
34:24
Speaker 7: No, the the support that I have gotten from this book,
34:33
Speaker 7: especially so I'm in the incontinuity of pignity groups on
34:36
Speaker 7: Facebook and they literally thanked me for bringing awareness to
34:42
Speaker 7: the condition because of course we all know that it's
34:45
Speaker 7: so rare. I've been applauded, I've been. The feedback has
34:51
Speaker 7: been phenomenal. The Yeah, the feedback has been supportive. It's
34:55
Speaker 7: been phenomenal just from do you know everybody who has
35:00
Speaker 7: you know, read it and it's so much as you
35:04
Speaker 7: can hear. But the book is just an introduction, you know,
35:08
Speaker 7: introducing the condition and introducing kaya while also you know,
35:13
Speaker 7: educating and uplifting and inspiring those It's a children's book,
35:18
Speaker 7: but I believe that they can inspire anybody just because
35:22
Speaker 7: you know, we all have differences, whether they're physical or not,
35:26
Speaker 7: you know, we all have differences. So no, no surprise,
35:31
Speaker 7: no surprise responses yet hopefully not. But no, they've been
35:36
Speaker 7: they've been really really supportive.
35:40
Speaker 2: Well I'm not talking about surprises in the negative way
35:42
Speaker 2: the responses because I'm thinking of hospitals having this book
35:50
Speaker 2: in there, you know, that's that your book. And I'm thinking,
35:57
Speaker 2: and what are they the upcoming projects orse genres you're
36:02
Speaker 2: interested in exploring.
36:04
Speaker 7: So, you know, I think I'm going to stay with
36:06
Speaker 7: the nonfiction. My next book, it's going to be a
36:10
Speaker 7: compilation book because my passion is to uplift, inspire, and encourage.
36:20
Speaker 7: I want to do a compilation book of mothers telling
36:23
Speaker 7: their story so they can have that support in that community.
36:31
Speaker 7: And being a mother of a child of a disability
36:37
Speaker 7: sometimes you you know, you you fall to the back right.
36:42
Speaker 7: And while I can relate to you know, mothers, you know,
36:45
Speaker 7: it's different relating with a mother with a child with
36:48
Speaker 7: a disability, and a lot of times I didn't talk
36:51
Speaker 7: about it, like I didn't talk about the full extent
36:56
Speaker 7: of what we went through. So my next book, I'm
36:59
Speaker 7: gonna do a compilation book and I'm going to share
37:01
Speaker 7: my side, my thoughts, my feelings, also bringing other mothers
37:06
Speaker 7: in who have children with different disabilities, so we can,
37:10
Speaker 7: you know, share our stories. We can help other mothers
37:15
Speaker 7: or even fathers because you know, fathers go through it too. Yeah,
37:21
Speaker 7: we want to we want to help them too, and
37:23
Speaker 7: we just want to, you know, make sure we teach
37:27
Speaker 7: you know, those universities, those hospitals because you know, with
37:30
Speaker 7: this condition, like I told you, the the doctors didn't
37:34
Speaker 7: even know. Like we found this all out together in
37:37
Speaker 7: the NICKU. So literally I am my hope and my
37:44
Speaker 7: goal is to get this as far as I can
37:49
Speaker 7: in the medical field, the hospitals, the school, libraries, you
37:53
Speaker 7: name it. I wanted to be in there. And then
37:56
Speaker 7: you know, once my next book come out, that'll be
38:00
Speaker 7: from my journey, which I.
38:02
Speaker 5: Go deep, so you'll get.
38:06
Speaker 7: Really really get a dive into that and just you know,
38:10
Speaker 7: and I said, my hope is always to encourage and
38:13
Speaker 7: always to inspire, and I wasn't always there, so you know,
38:19
Speaker 7: just being able to help the next mother, whether they're
38:23
Speaker 7: going through it now or whether they'll go through it
38:25
Speaker 7: down the line, they'll have something to go back and
38:28
Speaker 7: to refer to and they'll be able to say that
38:31
Speaker 7: this helped me through.
38:34
Speaker 5: So that's the goal.
38:36
Speaker 2: Muhamma said. Adults need to be educated as well. The
38:41
Speaker 2: adults need to be educated in so many different things
38:43
Speaker 2: that it's said they just need to learn period. So
38:47
Speaker 2: so we learned about IP from far and the author
38:51
Speaker 2: now I want to learn more about fairing, the more
38:54
Speaker 2: whose belief is you cannot pour from an empty cup.
38:58
Speaker 2: You fill your cup so you can overflow into the
39:02
Speaker 2: lives of others. And my God, that my cup. It's
39:07
Speaker 2: empty right now, but it's running over. You may not
39:11
Speaker 2: see all of this stuff, the nuggets that she delivered tonight,
39:16
Speaker 2: but any end I'm gonna hold on to it because
39:19
Speaker 2: I'm learning a whole lot, not just about IP, just
39:25
Speaker 2: about being period in the presence of others who are
39:32
Speaker 2: living with others who's living with I P So it's
39:39
Speaker 2: tell me about about fearing, tell me about who you are.
39:43
Speaker 7: So, as I mentioned, my passion is even from a
39:48
Speaker 7: little girl, I've always been how can I make you
39:52
Speaker 7: know your damen or how can I take the weight
39:55
Speaker 7: and the.
39:56
Speaker 5: Burden off of your shoulders?
39:58
Speaker 7: And growing up I've always it became that go to
40:01
Speaker 7: person for a lot of people. And I get it
40:06
Speaker 7: from my mother because she's in the exact same way,
40:10
Speaker 7: and because I have that.
40:12
Speaker 5: Heart to take the burden off.
40:15
Speaker 7: You know, sometimes you need that air, whether it's listening,
40:19
Speaker 7: whether it's whatever it may be, to you know, help
40:23
Speaker 7: you not you know, be able to get it off
40:25
Speaker 7: your shoulders. So I keep my cup you know, over
40:31
Speaker 7: I keep my cup filled. And I do that, you know,
40:35
Speaker 7: by prayer, By prayer, it's how I keep my cup full.
40:43
Speaker 7: And then you know, I can intercede for others and
40:45
Speaker 7: I can help them keep their cup full.
40:49
Speaker 5: So it's just always that's just just who I am.
40:51
Speaker 5: And I know, you know I have boundaries.
40:54
Speaker 7: Okay, I have boundaries because you know, be the go
40:58
Speaker 7: to person. You know, to have boundaries because people will
41:01
Speaker 7: just take, take, take, take, But.
41:06
Speaker 5: Just learning.
41:09
Speaker 7: Mostly just learning who I am, you know, just learning
41:11
Speaker 7: who I am, who I want to be, has allowed
41:16
Speaker 7: me to make sure that I installed those tools into
41:20
Speaker 7: my daughter, because even though you know she has in
41:23
Speaker 7: content of of pignity, I will not let it define
41:26
Speaker 7: who she is. We don't treat her different, and I
41:30
Speaker 7: won't let anybody else treat her different.
41:32
Speaker 5: I will educate.
41:34
Speaker 7: You, though, so I will teach you how to handle
41:37
Speaker 7: her while she is in your care. But that piece
41:43
Speaker 7: of it, you know, as as mothers, we you know,
41:46
Speaker 7: especially mothers of kids with disabilities, our focus is one
41:49
Speaker 7: hundred percent on them all the time. And so taking
41:54
Speaker 7: that step back sometimes and being okay to take that
41:56
Speaker 7: step back to have that self care, to focus and
42:00
Speaker 7: refresh so you can keep going.
42:04
Speaker 2: Wow, you mentioned in your bio that your faith in
42:07
Speaker 2: God keeps you anchored and gives you the strength to
42:10
Speaker 2: keep moving forward in life. What else or who else
42:13
Speaker 2: keeps you anchored? I don't you do it to keep
42:15
Speaker 2: you busy? Yes, but that's a pleasant way of being anchored.
42:21
Speaker 2: M h what else? Someone else?
42:24
Speaker 1: So?
42:25
Speaker 7: First my husband, right, So my husband definitely keeps me
42:29
Speaker 7: anchored because this is his story too, Right, I'm just
42:34
Speaker 7: the one that wrote the book, but this is his
42:37
Speaker 7: story too, going through it together, just being able to
42:42
Speaker 7: have that open communication with him, you know, we talk
42:45
Speaker 7: about like when things happen, how are you feeling about this?
42:51
Speaker 7: You know, we we've had a couple of traumatizing moments together.
42:56
Speaker 7: But just his strength through it, right, just his strength
43:00
Speaker 7: through it keeps me anchored, and just being able to
43:04
Speaker 7: be through it together, just that encouraging piece of it,
43:08
Speaker 7: just that you know, going to God in prayer together,
43:11
Speaker 7: keeping us both anchored. So he's the biggest support system.
43:16
Speaker 7: That's that's my friend. Look, and so he's definitely keeps
43:22
Speaker 7: me aching. And also just my family, just my old
43:25
Speaker 7: whole entire family. They have you know, taken the time
43:30
Speaker 7: to educate themselves so they can also know how to
43:33
Speaker 7: care for her, what to look for, and so it
43:37
Speaker 7: takes the burden off of us.
43:39
Speaker 5: You know.
43:39
Speaker 7: At first, we were really skeptical about sending her places
43:42
Speaker 7: because there's a lot that we have to explain to people.
43:47
Speaker 7: And after her third seizure, the doctor said, now you
43:51
Speaker 7: have to make people aware that she sees your prone.
43:54
Speaker 7: So when we send her, you know, on a couple
43:58
Speaker 7: of day trip, we have rescue that and just in
44:01
Speaker 7: case she has a seizure, so I have to you know,
44:04
Speaker 7: she comes with instructions.
44:06
Speaker 5: So for.
44:09
Speaker 2: Man, it's something else, right.
44:11
Speaker 7: And we were skeptical about sending her places because, you know,
44:16
Speaker 7: one we didn't want them to you know, I don't know,
44:19
Speaker 7: I guess our thoughts at first were like, we don't
44:20
Speaker 7: want her to be a burden.
44:22
Speaker 5: We want you to want her to come.
44:24
Speaker 7: But but my family, our family has stepped up tremendously
44:30
Speaker 7: and just educating themselves and just being willing to take
44:34
Speaker 7: that burden, you know, off of our shoulders. So, like
44:37
Speaker 7: I mentioned, the the condition is lethal and boys, I
44:40
Speaker 7: have a five year old son, so he did not
44:46
Speaker 7: have anything to do, you know with Ip. Yeah, we
44:53
Speaker 7: were pregnant with him. We did the word that a
45:00
Speaker 7: head and fine, so we did that with him just
45:04
Speaker 7: to make sure that he did not have the gene.
45:08
Speaker 7: And I'm not a carrier of the gene. I got
45:12
Speaker 7: tested and I'm not a carrier. So it's just one
45:18
Speaker 7: of those things that's down the line for her to
45:22
Speaker 7: have it. But yeah, so a lot of people would
45:25
Speaker 7: ask us, like, are you scared to have more children
45:28
Speaker 7: because it's a fifty to fifty you know, because she
45:30
Speaker 7: has it. But you know, by the grace of God,
45:35
Speaker 7: he's pulled us this far, and no, because it's gonna
45:38
Speaker 7: be whatever God wants it to be anyway. And if
45:43
Speaker 7: he if this supposed to be that way, I said, look, Lord,
45:47
Speaker 7: I know you may think I'm strong sometimes, but He
45:52
Speaker 7: has literally given us through and I can't thank him enough.
45:57
Speaker 5: Just for.
45:59
Speaker 7: Now I can be an advocate for something that's near
46:01
Speaker 7: and dear to my heart. And now I could be
46:04
Speaker 7: the voice because I'm her. I'm her voice, like she
46:07
Speaker 7: if someone talks to her or asks her something that
46:10
Speaker 7: she doesn't understand, she looks at me like and that's
46:13
Speaker 7: our communication. Like I don't know what they mean, and
46:16
Speaker 7: that that's for me to come around and say it
46:19
Speaker 7: this way to her, and that helps her understand. So
46:23
Speaker 7: we have an amazing understanding. I've included her in this
46:27
Speaker 7: entire process. She from the very beginning of the book.
46:30
Speaker 7: She's been included. So it's just wasn't a thing that
46:34
Speaker 7: I just did. I told her about it. I said, hey,
46:38
Speaker 7: I want to write this book. Although she doesn't understand
46:41
Speaker 7: right now. Prayerfully you know as she get older she
46:46
Speaker 7: will understand it. But we can't wait to be able
46:49
Speaker 7: just to share with her, you know, just what she's
46:51
Speaker 7: been through and show her how strong she's been because
46:54
Speaker 7: her strength has been our strength.
46:56
Speaker 2: So I'm just sitting here looking at the book of
47:00
Speaker 2: it's just everything that's coming to my mind, like pop
47:01
Speaker 2: ups and books and whatnot, just so she can feel
47:04
Speaker 2: it and see it and see that that's her a doll,
47:08
Speaker 2: you know, with her pale face and everything in the
47:10
Speaker 2: little appro puffs can get more deep. I think it's
47:19
Speaker 2: wonderful what you doing, and I want to thank you
47:22
Speaker 2: for bringing this disorder to light, because it had not
47:27
Speaker 2: been for you and your daughter and your family, somebody
47:31
Speaker 2: like me would have never known, would have never known
47:34
Speaker 2: at all. So you know, I have grandchildren. I'm going
47:38
Speaker 2: to educate my children, you know who continue to have children,
47:41
Speaker 2: and just to educate other people you know about about
47:45
Speaker 2: this as far as what I what I've learned tonight,
47:47
Speaker 2: and I'll continue to look to see what else I
47:51
Speaker 2: can find out about this disorder. So how can viewers
47:54
Speaker 2: and listeners connect with you?
47:57
Speaker 7: Yes, so you can reach out to me? So I
48:01
Speaker 7: have an author page on Facebook so that it's just
48:03
Speaker 7: author fair and maclimore. Or my personal page is fair
48:07
Speaker 7: and Maclamore super reached out to be there, or you
48:11
Speaker 7: can email me fairmaclamore dot com if or Fairmaclamore at
48:16
Speaker 7: Yahoo dot com.
48:16
Speaker 5: Fairmaclamore dot com is where.
48:18
Speaker 7: You need the book, and it's also available on Amazon too,
48:23
Speaker 7: so Amazon and Barnes and Noble. Or if you want
48:26
Speaker 7: a personalized copy, I Kamaya is signing books too, so
48:31
Speaker 7: if you want a personalized copy, you can d M
48:35
Speaker 7: me and I we will write a sweet message, encouraging message,
48:39
Speaker 7: we'll both sign it and we'll send you a copy
48:41
Speaker 7: to your address.
48:43
Speaker 6: Oh Facebook, Yes, indeed, yes, indeed, this this was definitely
48:56
Speaker 6: tonight's podcast with certainly a bonus.
49:00
Speaker 2: This is one of my bonus shows, and this is
49:01
Speaker 2: what happens when you have a bonus show. You have
49:03
Speaker 2: a bonus person to do just what you do. And
49:07
Speaker 2: as Maya says, being different is not something to be
49:11
Speaker 2: ashamed of. Embracing your uniqueness is powerful. Thank you so much,
49:15
Speaker 2: Mayas for your words, for your strength, for your family strength.
49:22
Speaker 2: I see just by talking to you, you have a
49:25
Speaker 2: calmness about you. I don't know how long it took
49:29
Speaker 2: you to get to that place, but I am so
49:31
Speaker 2: happy that you were at that place because a lot
49:35
Speaker 2: of people wouldn't be as strong as you are. I
49:37
Speaker 2: don't know if I could have I'll be probably breaking
49:39
Speaker 2: every day. I just told you that before all this,
49:42
Speaker 2: what it's like for me to find out one of
49:44
Speaker 2: my grands or somebody's in the hospital. It's war. It
49:47
Speaker 2: definitely is. And I'm not going to say that you're
49:50
Speaker 2: fighting a war because you guys are won and you're winning,
49:53
Speaker 2: and I like that. I like that. I'm not sure
49:58
Speaker 2: if you've heard of them. Most people have, but there's
50:01
Speaker 2: a hospital here in this state that I think that
50:04
Speaker 2: they should have your book. They do so much testing
50:07
Speaker 2: and I'm question they may have heard of the disorder,
50:11
Speaker 2: and that's John Hopkins. That would be one place, you know,
50:16
Speaker 2: I call the state that I live in Hopkinsville because
50:18
Speaker 2: everything is Hopkins here. You can't turn a corner without
50:21
Speaker 2: something being associated with Hopkins or either there. I guess
50:25
Speaker 2: their sister hospital Kennedy Krieger. And I'm not trying to
50:28
Speaker 2: plug them. They're not paying me, So anybody just say, oh, yeah,
50:31
Speaker 2: you know, I'm not getting paid. I'm just saying, is
50:34
Speaker 2: that I heard of the hospital. Some have their opinions
50:37
Speaker 2: about it, but that's a well known hospital as far
50:41
Speaker 2: as I'm concerned, and you may want to plug into there.
50:45
Speaker 2: And they do have a school as well. You know,
50:48
Speaker 2: education is on medicine. Everything is on medicine. And to
50:53
Speaker 2: have you being a spokesperson. I don't know whether they
50:57
Speaker 2: have a department there in that hospital, but check out
51:01
Speaker 2: that hospital. You just never know it. Could they can
51:07
Speaker 2: use somebody like you to talk to other parents that
51:11
Speaker 2: maybe going through that journey or maybe getting ready to
51:13
Speaker 2: go through. Some doctors don't know what to say. You know,
51:17
Speaker 2: you and your doctors found out about your daughter. Unfortunately,
51:21
Speaker 2: there could be somebody that's going into a hospital that
51:23
Speaker 2: could be pregnant or you know, thinking about having it,
51:26
Speaker 2: and then they may carry the gene or either it
51:30
Speaker 2: could have skipped it somewhere along the generation and they
51:32
Speaker 2: may be going through or getting ready to go through
51:34
Speaker 2: what you've been through. And Hopkins and on most hospitals
51:39
Speaker 2: or hospitals to know about this. If they don't, shame
51:43
Speaker 2: on you that you don't. You're in the medical field.
51:46
Speaker 2: And I'm not saying everybody every hospital's going to know everything,
51:50
Speaker 2: but when it's a disorder, you know, you're in the
51:54
Speaker 2: labs and you're doing all of this with the tubes
51:56
Speaker 2: and everything, so you know, start start looking at it
52:00
Speaker 2: and what any disease and this is important. One I
52:04
Speaker 2: don't believe is more important than the other mm hmm,
52:07
Speaker 2: but try try that way of John Hopkins.
52:13
Speaker 7: Oh, you know, I go back to you know your
52:16
Speaker 7: question that you asked. Has any of the responses surprised me?
52:22
Speaker 7: And something that recently just happened. This was just a
52:24
Speaker 7: couple of days ago. I got a call from my daughter,
52:28
Speaker 7: my daughter's neurologists, and it was a mother who was
52:36
Speaker 7: looking to connect with another parent. Her daughter was just
52:41
Speaker 7: diagnosed with IP and her doctor referred her to me,
52:47
Speaker 7: told her I had just wrote a book about it,
52:49
Speaker 7: and asked me to call her. And I was like, well,
52:54
Speaker 7: thank you for thinking of me, you know, And I
52:58
Speaker 7: did call and I didn't talk to the wife, but
53:01
Speaker 7: I did talk to the husband. And their daughter is
53:04
Speaker 7: just two years old. But I remember, you know, when
53:09
Speaker 7: Camayah was too, and you know, he asked all kinds
53:13
Speaker 7: of questions, and it was very rewarding just to be
53:18
Speaker 7: able to listen, just to be able to help guide him.
53:24
Speaker 7: I said some things that he even was well, I
53:26
Speaker 7: didn't think about it that way, you know, because you know,
53:30
Speaker 7: his daughter's too, and she's not walking or talking because
53:35
Speaker 7: it's delayed, right, And so I was able just to share,
53:39
Speaker 7: you know, where Camaya was at two years old, and
53:41
Speaker 7: and how we navigated you know, through that. It kind
53:45
Speaker 7: of just gave some tips. I'll be sending him a
53:48
Speaker 7: copy of the book, just because you know, I think
53:51
Speaker 7: that is, you know, important that we stick together. I
53:54
Speaker 7: told him we'll both sign it and we'll send it
53:57
Speaker 7: to him, and you know, he said he hoped that
53:59
Speaker 7: he meet us one day. And of course, you know,
54:02
Speaker 7: of course, just to be able to help any way
54:05
Speaker 7: I can, because as I'm going through the process. I'm
54:09
Speaker 7: also learning, you know, I'm also learning more and more
54:14
Speaker 7: and more based on kamaya Right, So I said, I
54:17
Speaker 7: work with someone who has a mild condition. She doesn't
54:21
Speaker 7: have the brain part of it, but you know, she
54:23
Speaker 7: had the skin part of it. She had to have
54:25
Speaker 7: implants in her teeth, and so you know, I didn't
54:29
Speaker 7: even know there was a mile because Kamayas is severe,
54:32
Speaker 7: so I didn't even know there was a mild version
54:34
Speaker 7: of it. But just to be able to connect with people,
54:39
Speaker 7: you know, on that level is very rewarding for me.
54:46
Speaker 2: Okay, then its loss for words and that doesn't usually happen.
54:52
Speaker 2: I'm going to end it, would just say join us
54:54
Speaker 2: on October thirtieth for another bonus podcast. We'll be speaking
54:58
Speaker 2: with screenwriter Moses King Taylor after eight after Dark and
55:03
Speaker 2: thank you so much. Thank you both, Thank your family
55:07
Speaker 2: for being so transparent at this time. And if there's
55:11
Speaker 2: anything I can do with my podcast, there's every time
55:15
Speaker 2: that something comes up and you want to talk about it,
55:18
Speaker 2: please contact me. I'm gonna make space.
55:23
Speaker 5: Thank you.
55:23
Speaker 2: I appreciate you, and now I appreciate you for sharing
55:28
Speaker 2: me because a lot of people would crawl into a
55:30
Speaker 2: COCOONA just won't and they won't share what you did,
55:35
Speaker 2: and you're continue to do so, and I thank you
55:36
Speaker 2: so much for that. I see you, guys, but I
55:41
Speaker 2: see you good night.