00:00Our daughter was born without legs and ears.
00:02This is all she does all day long,
00:04just back and forth, back and forth.
00:06Amaya is only two years old and has had seven surgeries.
00:10Three of those were just in the first six weeks of her life.
00:13Oh, it's okay.
00:16You don't like it? Okay.
00:18You don't have to.
00:19We've taught Amaya how to crawl around on her arms
00:21and use sign language to communicate,
00:23but she doesn't need us.
00:24She's a fighter.
00:25It could be sitting at home, you know,
00:27sad and crying about it because she is born different,
00:29but we wouldn't have her any other way.
00:32Hi.
00:34Say hi, Amaya.
00:35Good morning.
00:36Here.
00:40Amaya was born with caudal regression syndrome
00:43that affects the lower part of the spine and spinal cord,
00:46so that's the reason for her not having legs.
00:50She had a cleft palate.
00:51She has a tethered spinal cord,
00:52small kidneys, small bladder,
00:55and she was also born with microtia,
00:58so her outer ears are malformed
01:00and she doesn't have open ear canals,
01:02so she is hard of hearing and she wears a hearing aid.
01:05We use spoken English to communicate with her,
01:07but we also use sign language as well.
01:10Amaya.
01:11Want more?
01:13She's, like, not interested.
01:14Want more sausage?
01:17Good morning.
01:18Yeah, we speak to her in a lower tone
01:20because that's what she hears more easily
01:23without her hearing aid on.
01:25She can hear, like, muffled noises.
01:28It sounds like she's basically underwater.
01:30Like, that's how she hears
01:31when she doesn't have her hearing aid on.
01:34Let her do it.
01:36Good job.
01:38Come on.
01:40You gonna give a call to my mommy?
01:43So, when and how were you first made aware
01:44that Amaya would be born different?
01:47So, I went for my 20-week anatomy scan,
01:49and they were like, yeah, no growth at all.
01:51Like, we don't see legs at all,
01:53and so I had a breakdown,
01:55and the hospital, we were definitely worried
01:57when we found out that she was gonna be born with no legs.
02:01We didn't know the extent of her condition
02:03while I was pregnant, so as soon as she was born
02:06and we found out, you know, exactly what was going on,
02:08we were definitely worried about the future.
02:10When she was born, she wasn't breathing,
02:12so they were trying to put on a ventilator
02:15so she could breathe,
02:16and they were having difficulty with that
02:18because she had cleft palate.
02:20She had a foot that was, like, attached to her body,
02:23and then we had to have that amputated
02:26because it was causing a lot of pain.
02:28And then when she was six weeks,
02:29she had a surgery on her jaw.
02:31They placed hardware in her jaw
02:32to pull her jawbone forward so she's able to breathe.
02:37That was a big surgery, really scary.
02:41And then we have one coming up.
02:43We are nervous about the spinal cord surgery
02:46that she has coming up.
02:47It's to release the spinal cord from Amaya's spine.
02:52It's kind of a big surgery.
02:54It's gonna be a dangerous and really expensive surgery.
02:56We do have a GoFundMe for Amaya's surgery
03:01just to kind of help out.
03:03We don't know, you know, how long we'll be missing work.
03:06It's really difficult to balance everything
03:08when we go to surgery.
03:10It's just a lot of time, a lot of effort,
03:12and a lot of money involved
03:15whenever it comes to Amaya having surgery.
03:18It will hopefully be the last one
03:19that we have to have ever.
03:24This is all she does all day long,
03:26just back and forth, back and forth.
03:28So Amaya goes to therapy four times a week.
03:31She has physical therapy, occupational therapy,
03:35speech and feeding therapy.
03:37Physical therapy, we work on her range of motion
03:39and her mobility.
03:40The goal is to get her to pull up on top of this
03:45and into a sitting position, like as if it were a chair.
03:50Pull, pull, pull.
03:52Up, up, up, pull, pull, pull, pull, pull, pull, pull.
03:55It's okay.
03:58You don't like it?
03:58Okay, you don't have to.
04:01We're happy with the progress that she's making.
04:03We have to be cautious with her
04:04because she like knows no limits.
04:06She'll do whatever she can.
04:07She'll climb on anything, under things.
04:10So we have to really watch her.
04:12All this therapy that we work on every day of the week
04:15will help her, you know, grow into an independent person.
04:20I'd love for her to just not have to rely on anyone.
04:24I think as she grows and continues to learn,
04:27I think she'll be very independent.
04:30Amaya.
04:31Amaya loves her older sister, Araya.
04:34They play like all day together.
04:36I fall, you fall.
04:41Amaya's different than other kids.
04:42She's like unique.
04:45At first we didn't know, you know, at the hospital
04:48how to let Araya know that her sister didn't have legs.
04:51We didn't tell her.
04:52Her only question was, are they gonna grow back?
04:54Like, no, that's not gonna happen.
04:55Her legs aren't gonna grow back.
04:56I'm definitely gonna be protective of her when she's older
05:00and like when she actually gets into school.
05:02Araya is very protective of Amaya.
05:04She talks back to the people in public
05:06and I have to tell her like, we can't do that, you know?
05:09Hi.
05:11Ready?
05:12We're gonna see our friend, Samuel, at the park.
05:15I love Sammy.
05:16Let's go.
05:18Okay.
05:21So usually when we go to grocery stores, things like that,
05:26kids, you know, they see Amaya and they kind of give a face.
05:30Like kids are like, oh, she doesn't have legs
05:32because they don't know, you know, like what to say.
05:35Most of the time when the parents see her,
05:36they just see her hair.
05:38They're like, oh, she has, you know, she has cute hair.
05:41But sometimes, you know, you can see their face
05:43go from a smile to like, wait, what?
05:46Yes.
05:47Like they see her face and they're like, they'll say it.
05:49They'll like comment, oh, she's so cute.
05:50And then you see their eyes go down
05:52and then they're like, oh.
05:54Like, and then end of conversation.
05:57I started making TikToks and tried to spread awareness.
05:59This is Jalen and my daughter Amaya
06:01was born without her legs.
06:02The response online has been more positive now.
06:07When we first started out, they say some crazy stuff.
06:11Some of them type out paragraphs this long
06:13to tell me how bad of parents we are
06:15because we kept her.
06:17I wanted to be a support to other women
06:19that may be pregnant with a child with a limb difference.
06:23I showcase her moving around and getting around
06:26and show them that she's not just stuck in one place.
06:29Good job.
06:31Hey, he's grown since I've seen him last.
06:35Way to do, Maya.
06:37You ready to play?
06:39Ready to play.
06:41If you have a child that's born different,
06:43don't let other people get to you.
06:45Wow.
06:47You know, a lot of people have had things to say about us
06:49and it's been difficult.
06:51A lot of people see her and think that she's not capable
06:54of doing anything just because she doesn't have legs.
06:57Hopefully once she gets older,
06:59she's able to spread awareness and let other people know
07:02that just because she has, you know, disabilities,
07:05she's still able to do things.
07:07Amaya is Amaya and she's gonna do things on her time.
07:12I think Amaya couldn't have better parents
07:14for her condition.
07:15They've overcome milestones that I can't dream of.
07:18I'm sure it was hard to talk about it first to anybody
07:20and it's good to be able to be, you know.
07:23There for them.
07:24Yeah.
07:25When we can.
07:26Yeah.
07:27She's the reason I get up every morning and go to work.
07:29We've seen a lot of growth just in ourselves and with her
07:32and we're forever grateful for her.
07:35We could be sitting at home, you know, sad and crying
07:37about it because she is born different
07:39but we wouldn't have her any other way.
07:42Yeah.
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