Defying The Odds Without Ears & Legs | BORN DIFFERENT
ADORABLE two-year-old TikTok star, Amaya, was born with no legs and no ears due to a range of complex conditions that developed during mom, Jaylynn's, pregnancy. Among the conditions present at birth, Amaya was diagnosed with caudal regression syndrome - "the reason for her not having legs" - and microtia and atresia, meaning her ear canal and outer ear did not fully develop. Doctors first became aware that Amaya would be born different at Jaylynn's 20-week scan, when it became clear that she had no legs growing - but Jaylynn and Amaya's dad, Chris, were then forced to wait nervously until their daughter was born to learn the "full extent of her condition." With a cleft palate causing immediate breathing difficulties and her jaw complicating the issue, their newborn baby had three crucial surgeries within the first 6 weeks of her life. When the family were finally able to take her home after months in hospital, they wasted no time in adapting ways to include Amaya in every aspect of family life - with protective older sister Ariah taking her under her wing. Jaylynn has learnt sign language to communicate more easily with Amaya and the family talk to her in lower tones, which she can more easily hear. Having overcome many hurdles already through regular therapies focused on developing Amaya's mobility, Jaylynn and Chris are under no illusions that their daughter will have many more challenges to face as she grows up. With another significant spinal surgery on the horizon, they have set up a GoFundMe page to help raise funds to support her through yet another gruelling recovery period - a choice they had to make in order to protect her longer term future. But despite everything she and her family have been through, Amaya is full of joy and energy and laughter - and her parents have seen her progress from one milestone to the next. Jaylynn told truly how they now "have to be cautious with her because she knows no limits" and, as Amaya's mobility goes from strength to strength, Chris has no doubt that "she'll be very independent." Since sharing Amaya's journey on TikTok, Jaylynn has been able to raise awareness and advocate for her daughter - who, in turn, is inspiring and encouraging other young families going through similar experiences. And her parents have been just as inspired by their daughter as anyone else: "We've seen a lot of growth in ourselves and with her - and we're forever grateful for her. We could be sitting at home crying about it but we wouldn't have her any other way."
If you can, please consider donating to help fund Amaya's upcoming spinal cord surgery: https://gofund.me/1bc60b7d
If you can, please consider donating to help fund Amaya's upcoming spinal cord surgery: https://gofund.me/1bc60b7d
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FunTranscript
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.