- 18 hours ago
00:00 - Introduction
01:24 - Nova & Living With A Cranial Facial Difference
08:41 - Victor & CLOVES Syndrome
13:21 - Holden & Lesch-Nyhan Syndrome
18:29 - Maryam & Mia's Osteogenesis Imperfecta
26:31 - Harrison & Scleroderma
34:43 - Raedyn & Pfeiffer Syndrome
01:24 - Nova & Living With A Cranial Facial Difference
08:41 - Victor & CLOVES Syndrome
13:21 - Holden & Lesch-Nyhan Syndrome
18:29 - Maryam & Mia's Osteogenesis Imperfecta
26:31 - Harrison & Scleroderma
34:43 - Raedyn & Pfeiffer Syndrome
Category
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FunTranscript
00:00There's no name for what Nova has. It affects her hearing, breathing, speech and her eating.
00:07Our child does look different and he was born that way and we never knew he was going to be
00:11able to do all the things he can do and he amazes us every day.
00:14His condition causes him to want to physically and emotionally hurt himself. His brain will tell
00:20him that it's going to hurt when he bites his fingers and his brain's also at the same time
00:26telling him that he has to bite his fingers. Maryam and Mia were born with multiple fractures
00:30all over their bodies. The doctors said we don't know if they're going to live another day,
00:34another week, another month. They had zero hope for the girls. Sorry.
00:37Harrison has an autoimmune disease. Makes his skin very tight. Can't flex his feet or move his hands at all.
00:44Why you look weird? That's what mostly people say to me. I keep telling them that I have a condition.
00:51Our son Raiden has had 30 surgeries and 14 on his skull alone. This is actually what Raiden looked
00:57like before any surgeries. When Raiden was born, he was unable to breathe so our doctors asked if we
01:03wanted to keep him alive. I've been called selfish for keeping my son alive. He's been called terrible,
01:10mean things, ugly, creepy, creature, monster. Despite everything that's been thrown Raiden's way,
01:16he's an absolute fighter. Raiden deserves to share his story and he deserves to be seen just as anybody else.
01:31Nova is your standard two-year-old right now. She is full of energy, she loves to dance,
01:38she loves the music, she loves the photos. And being around people. Yeah. Maybe like the life of the party.
01:46Yeah, life of the party. That's our little girl. Nova was born with a craniofacial difference.
01:53Currently her condition is undiagnosed. We've had genetic testing so there's no like name for what
02:00Nova has. It affects her hearing, breathing, speech and her eating. So that's why we have the tracheostomy
02:07and her G-tube. She has a severely reduced hearing because she has the jaw crushing her airway and
02:18and the palate affecting things like speech and eating and swallowing. She is not able to
02:28do all of those things that we just naturally do ourselves.
02:33Oh wow. So we were just setting up Nova's feed and she's fed by a pump and a G-tube
02:40in her stomach.
02:44Good girl. Yay. And this side. And lunch time.
03:06It seemed all normal at first and we had an early scan that showed that she might have some facial
03:11differences and we thought that would be quite small. We didn't get to bring Nova home for 101 days.
03:17101, yeah. When we first left the hospital of Nova it felt so good to be free because it felt
03:24so
03:24confined for so long but also terrifying that we might not know what we're doing.
03:30Yes, like.
03:37This is on us now. We've got to get this sorted.
03:40I think that's how all parents feel when they first go home.
03:42Yeah. Stand up.
03:44Stand up please.
03:45Good girl.
03:49Do you want to take one of me?
03:51The biggest sort of hurdle that we've had apart from all of her surgical procedures and going
03:57through that is just the communication. Like it's been so challenging to learn a completely new language
04:06and to be able to communicate with her.
04:12Read a book.
04:15Book.
04:16She's not able to have a jaw opening wide enough because of the small jaw. We're not able to fix
04:23her palate, which is delayed, which means her speech is delayed.
04:28Huh?
04:28Red flower.
04:30A red one.
04:31Red flower.
04:32Her signing.
04:32Yeah, absolutely.
04:33Because she's signing a lot, it just means that we have that communication with her
04:38and that's been so challenging because for the longest time there's been like no back and forth at all.
04:50Her signing has like increased tenfold.
04:53You can now show her one new sign and she'll repeat it straight away and almost remember it.
04:58Come here. Can you smell? Can you smell?
05:04Nice.
05:06Yeah, I would say our biggest achievement was her walking. That was major because I didn't,
05:11we weren't sure if she was ever going to figure that out. When we finally got her to walk it
05:15was
05:15like whoa amazing.
05:23With a child with special needs you don't have an idea of what that future holds and so I found
05:30myself searching online for videos just to sort of have an idea about what's next. What would the future hold
05:38for us and for Nova and, you know, are there people out there living a life like this that are
05:45happening?
05:45I'm so happy. The video that spoke the most to me was a beauty blogger called Marimar.
05:52She explains that she has hard days but all in all her family is supportive and she
05:58doesn't, you know, she's not bought back by this difference at all. She is just herself. That's all I want
06:04for Nova.
06:05So I've got a iPad. Oh, stop it. With a little message.
06:36She's so cute. She's so sweet.
06:48You look so cool.
06:51She loves the camera. She loves to entertain. She loves people.
06:55So why would we hold her back?
06:56Yeah, why would we hold her back? We want her to feel like she can do anything.
07:01So we started Noah's Instagram probably about a year ago.
07:05I think people are quite drawn to her.
07:06Yeah, people are just naturally drawn to her.
07:09Yeah.
07:12The page has evolved over the last year. It's become more of an awareness page for people like Nova,
07:20people with facial differences, and educating people that, like our daughter Nova is,
07:29first and foremost, just another little girl, just like all other two-year-olds.
07:34I want to educate people that you don't have to be afraid to say hello to someone like Nova.
07:40You can honestly just say hi. She'll say hi back.
07:43She'll probably run up to you first and give you a giant cuddle.
07:49Do you want to go to the park, bubba?
07:52We've started to think about Nova's future and schooling.
07:56School and surgeries and that's sort of a little bit scary.
08:02We sort of just deal with what we've got in front of us right now, one day at a time.
08:06We'll figure it out when we come to it.
08:23I hope that we can change people's perception of normal because, you know, this is our normal.
08:31It may not be your normal and it may be different to your normal, but I just want people to
08:35see
08:37what that is for us.
08:44Victor is like every other three-year-old. He loves to play with his friends, have fun.
08:49It's interesting to watch the other kids interact with them because I don't think any of them notice
08:55anything different. So they just, he's just another kid in the class.
09:11I mean, he's very social. He loves his classmates. He loves the kids. They love him, you know.
09:16He has learned to overcome adversity and no other than anybody I've ever met in my life. I mean,
09:23the kid doesn't let anything stop him.
09:25Three-year-old Victor Padilla was born with an incredibly rare condition known as clove syndrome.
09:41I had a lot of pregnancy complications that kind of indicated to me that he was going to have some
09:46neurologic issues.
09:50Cloves is an overgrowth illness that causes complex vascular anomalies, often leading to the formation of
09:57tumors on the body.
10:00It's 200 people worldwide, so it was like a one in 50 million chance of developing this.
10:08When he was first diagnosed, there was less than 150 people a couple years ago, so I firmly believe
10:14that there's a lot of people that go undiagnosed.
10:22There are so many complications that go along with his syndrome, and for the most part,
10:26we've kept him out of the hospital. He does have things come up and surprise us all the time.
10:32It's terrifying holding your kid when they're gasping to breathe, and they just can't get that air in and out.
10:47We were hopeful for his future, but they don't know. It hurts so bad every time we see a child
10:55die
10:55with his syndrome. You know, we always wonder if it's going to be us next. So we are trying to
11:02raise
11:02awareness for his syndrome, and the more we can find out, the more we know, the more we can do
11:10to keep him living as long as we can.
11:20So we try to still keep it positive with all of his doctor's appointments.
11:26Because of the nature of his disorder, Victor regularly visits Dr. Kwon,
11:31a pediatric neurologist who's been monitoring his progress since he was born.
11:37So some of the risks that we see with Clove's syndrome have to do with the overgrowth. So
11:43there is always a risk of tumor developing. So Victor has already had some of the complications
11:49that we see with Clove's syndrome. Those include epilepsy from the fact that his brain is formed
11:55differently on the right side. He also has some facial asymmetries. But surprisingly, Victor has done
12:01incredibly well. He remains an incredibly active and very bright boy.
12:09I think that it's hard to tell just from looking at the picture of his brain what he can and
12:16can't do.
12:16That's why it's been great to see him and see all the things that he's doing, which are very typical
12:21and very reassuring. This is a pretty rare, unusual syndrome. Is there a cure for Clove's syndrome?
12:30No, there's not a cure for Clove's syndrome. It's a disease that's managed.
12:35Good job. Now what color are you going to do? He doesn't let anything stop him. He's so motivated
12:41for everything that he has no fear. He does what he wants and he keeps trying until he accomplishes
12:51his goal. He's proven so many statistics wrong. He's proven all the research that I've done wrong.
12:59You know, he's walking and talking and learning and running and playing and he's very social.
13:07He's a little slow on things, but for what he has going against him, he's doing phenomenal.
13:13He's a miracle kid. Yeah. He's our little miracle.
13:22Holden's eight. So Holden was born with Lesch-Nihan syndrome. So it presents like cerebral palsy and
13:30the way his body doesn't cooperate. His mind's all there. One of the major things is self-harming.
13:36Kids will bite. They'll try and injure themselves. Perfect.
13:44When I have the arm braces on, his hands would be able to get to his mouth and then he
13:48would bite
13:48on his fingers or he'll try and bite up on his upper arm. So I can take his arm brace
13:53off and show
13:54you what'll happen. If I was to let go right now, it's like hands instantly to his mouth and he'll
14:00try
14:00and bite. Even though they feel the pain from biting, they'll just continue to do it until you
14:07physically stop them or the episode just passes. Day-to-day life, he needs help getting up, getting
14:16changed. He uses his wheelchair most of the day to get around. So you just have to watch. Holden can't
14:26physically hold this and push down the button. So I took it apart and adapted it so that his
14:33accessibility switches will plug into it and he can run it through those switches. So I adapted the game
14:41and the toys for him basically so that we could play normal games together instead of just watching TV.
14:51Who's going to win this one?
14:52Who's going to win this one?
15:11Are you catching me?
15:16Who's going to win this one?
15:17His body's constantly telling him to harm himself either physically or emotionally. So
15:25say his body tells him, okay, you got to whack your dad. So he'll whack me and then he'll
15:34know that it's going to hurt the person that we hit and they're going to be upset. So you just
15:39have to
15:40downplay everything and pretend like it doesn't exist. And that helps curb the behaviors.
15:46It's going to be good enough. You watch. I'm always constantly tinkering or trying to tweak things
15:54to see how they can work best for him. I guess his conditions also taught me more patience in dealing
16:01with everyday things. He was born. Nothing was wrong. Around three months he was really floppy still.
16:19He wasn't getting the tone and being able to sit up like average kids. And then we started taking him
16:26to the doctor. They did genetic testing and found out that it was in fact Lush-Nayan syndrome.
16:31It was scary at first when you read up and there's pictures of kids and they've nod their lips off
16:36and their fingertips are all raw. So I think that's what pushed me, myself to get him out there and
16:42get him involved in stuff. I want to show Holden that he can do whatever his friends do that his
16:49disability doesn't define him. So this is Holden's sledge hockey sled that he uses to play hockey on the ice.
16:56We put roller blade wheels on the bottom of it so that he can go play road hockey with his
17:01friends.
17:01So he's got straps to hold him in, keep his legs down so that he doesn't kick his legs out
17:07on either
17:07side and catch his feet. Holden's big on sports. If he can cheer for someone against someone else
17:14then he's right into it. He's game for anything really. You name it, Holden, he'll try it. It's a little
17:24dangerous sometimes. I think it's important just to get him out there and socialize with other kids
17:32and be with his peers. I grew up playing sports my whole life.
17:57We're kind of live in the moment type of people. If Holden wants to do something, we just
18:03make it happen and do whatever we can to try and accomplish it. He's like my best friend. We do
18:11everything together. It's hard for me to put into words just the the bond that we have. I just want
18:18to hold him to prosper and to be able to achieve what he wants to out of his life. That's
18:25really all
18:27that you can ask for. And here's one for Miriam and here's one for Mia.
18:40Can you tell me about the condition Mia and Miriam have? The condition they have is called
18:47osteogenesis imperfecta and it's also known as brittle bone disease. It causes them to have
18:52fractures because of the mutation in the collagen gene that they have. There's several types of it.
18:58The type that they have is a little bit more severe than others. It is very rare, especially
19:04because like, you know, they're identical twins. Eating is the best part of their day. Do you love
19:10to eat? Yeah. What about you? Do you love to eat? Yeah. You eating that one? Not only does it
19:19affect
19:19their bone quality and it causes it to be weak and fragile, but it also causes them to have muscle
19:25weakness across her body. So both girls weigh between 13 to 14 pounds. Um, and they are 25 inches.
19:34The girls are like the size of like a, an eight, nine month old baby. And I do that comparison
19:39based
19:40on their younger brother Yusuf when he was younger and I would put them like all three next to each
19:43other. They would all be like the same size. Wow. You like your coat? Yeah. Give me your arms.
19:56Miriam is wearing a coat. My husband and I were first made aware that Miriam and Mia were going to
20:01be born different at the 20 week anatomy scan. The arms and the legs, they said that they were measuring
20:06a
20:06few weeks behind. And I think I remember he said that the chest is going to be a bit small
20:11for the size of
20:12the body. But why? We were like, okay, so basically you're saying they're going to have some form of
20:16dwarfism. And they were like, yeah, okay, that's fine. But before they were born, they did also
20:21notice some bowing in their arms and legs. When the girls were born, they did x-rays and that's when
20:26they noticed they have fractures all over their bodies. They have fractures in their arms, legs,
20:30and their ribs. They have fractures in their shoulders. They would basically say like, we don't
20:34know if they're going to live another day, another week, another month. The doctors focused on keeping
20:39them comfortable and keeping them on morphine to kind of like numb the pain. They had zero hope for
20:44the girls to make it. And we almost lost them twice. And they were still in the NICU. Sorry. As
20:53a mom,
20:53you know, you cannot help but think, what did I do wrong? Papa, you going to put her in the
20:59car seat?
21:00Let's go. I'm going to go with therapy. And then, when we get back, okay. Yeah.
21:09Thankfully, you know, we got connected with the right people and they connected us with the
21:20OA specialists and I'm forever grateful for them. Slowly, we were able to go down on the oxygen. So
21:27both girls were discharged from the NICU on January 17 of 2021. We weren't able to really get very
21:40comfortable handling them until they were at least like five or six months old. We had to keep them
21:48on pillows. We had to dress them from the bottom up. Every time I come to change their diapers, it
21:54would
21:54be a bit tough and they would cry and they would get hurt. It was super easy for them to
22:00get
22:00fracture. They would get fractures just from laying down and just not doing anything. As parents, it's
22:07very hard and very tough to see them go through the pain that they have to go through. Sometimes,
22:12I'd go into the closet and cry. I'd feel like so overwhelmed and under so much pressure and I didn't
22:18know if I was doing the right thing. It was definitely an adjustment, but that was basically
22:24like the new page to our story where like everything changed to the better. All righty.
22:34Switch. We'll switch on our way back. Okay. You can be there and me, I can be here. All righty.
22:40We got them fully rotted this year. So they have rods placed in both of their humerus bones,
22:46both of their femurs and both of their tibias. And we get an infusion once every three months.
22:50It really helps strengthen the bones. They get a PT once a week, OT twice a week and speech once
22:55a week.
22:56And we also have them enrolled in aqua therapy. They've been getting physical therapy at this clinic
23:02since I believe it was maybe March or April of this year. And just since then, we've seen like a
23:09remarkable change and remarkable like progress with the girls. The goals are to get their core
23:16muscles strong and get them to be able to to do more things with their bodies, whether it's sitting
23:21up independently or rolling or tolerating being more on their tummies and and lifting their heads
23:27upwards, kind of like how a baby would do before starting to crawl. So we've been working on sitting
23:32them up independently and sitting up on a hard surface, not just a soft surface. So this is what
23:38Mia's doing over here. And she's working on reaching with both hands and trying to maintain
23:43the balance of her body. You've got to use your muscles here. Ready? Bend your knees up. Now lift.
23:50Keep this arm down. You can do it. Just your legs. Push. Two more. Ready? Okay. We can be all
23:56done.
23:56One more. All right. So I want you to- Good job. You did it.
24:00Fast forward four years later, with them getting the infusions, them getting all the therapies,
24:05and they're not on oxygen. They don't have feeding tubes. They can eat and drink anything.
24:11They can sit up. They can move. They can roll. The last appointment we had with the OI clinic,
24:16they did x-rays and bone density scans on them. They said that the results are 50 percent better
24:21than last year's. They told me, they were like, it's amazing how far they've come. And I told them,
24:27yeah, I know. I have trust in my girls. That's why they made it this far.
24:32Now I think that I have a much clearer image of what their life is going to be like down
24:38the road
24:39when they're like in their 20s. I am confident that the girls will be able to be independent,
24:44and I think that they'll be able to have a good life. My family life right now is beautiful.
24:49We're very blessed to have this beautiful family that we've made for ourselves.
24:54I love seeing all the kids grow and have this beautiful relationship that they have with each
25:01other. So Yusuf is now, he will be two years old next month. He's still trying to understand
25:09why he has to be gentle, why he can't just hold a toy and throw it at one of the
25:14girls,
25:14you know, or like why he can't just run and hug, hug them. But the older he gets,
25:21the more he understands. I feel like whenever they do grow up, he's going to be this loving brother,
25:26where they can always lean on, you know, ask for advice, ask for help, for assistance. And this is
25:32what my husband and I are working so hard on our kids to make sure they have this relationship. We
25:43love baby Yusuf? Do you love him? We hope that the girls feel very positive and feeling like they
25:53could accomplish everything and anything they want in life. I want them, whenever they do grow up,
25:57to feel like nothing is impossible for them to accomplish. We decided to start filming the
26:02girl's journey on social media. So when the girls do grow up, they see all the positive comments,
26:07they see their own progress. They see that, you know, yes, I was born, you know, I had this,
26:13I struggled with this, this, this and that, but look at me now. Look at where I am now.
26:18Our journey started with pain, but I know it's going to have a really nice, happy ending for the girls.
26:31My mom helps me with getting dressed and putting on my shoes every single day.
26:37It's difficult for me because of my hands. A lot of things that I can't do. Scleroderma is an
26:45autoimmune disease. Harrison has a skin-based scleroderma and he has the rarest form. He's the
26:51only one in Australia with the form he has and there's only 30 in the world. It's a build-up
26:55of
26:55collagen in his skin, so it makes his skin very tight, creates contractures in his bones. He can't
27:02flex his feet or move his hands at all. That's why I got bandages on my feet and my hands.
27:07It has
27:08like scabs under it and that's from scleroderma. There's no cure for this disease.
27:14So the medications Harrison has every day is the tablet is periactin and that
27:24helps his appetite and stops him scratching. Also has methadone for pain and the last one is
27:31just an antibiotic to stop his skin getting any staph infections. When I was very young it used to
27:40make it wrinkly and all scratching and stuff and skin starting to peel off and all that.
27:49And your skin was very tight? It was very tight. They said I had three years to live but I
27:56was four
27:57years old then and look at me now, I'm 12. So I survived it. Lisa, when did you realise that
28:06Harrison
28:06was a talented artist? I think from kindergarten, probably three-year-old, he was always very arty.
28:14The longer we spent in hospital the more he'd sit and draw and colour. When he got his first
28:19finger amputated it was from his right hand and he managed to teach himself to be left-handed and
28:25that's how he draws now. When I drew my drawing it makes me feel like amazing, feel like I could
28:30do
28:31anything. Why did you have to have your fingers amputated? Because if I left them it would be
28:37very, very bad decision. If I left it, I had to cut off my whole hand. When they told you
28:45that you had
28:45some of your opinions, how did you feel? I feel a little bit sad but I feel like it was
28:52for the best.
28:53How many surgeries have you had now? 100. Over 100. So we go in every month to get his bandages
29:02cleaned and all washed properly and then when he has his ECP or photophoresis he has to go under
29:09general anaesthetic and that's what saved his life. We started this treatment in December 2020 which is
29:14fortnightly at the moment. They take his blood and clean it and then they put UV rays into the blood
29:21and put it through like a solar panel type thing and which gives us a blood product which we re
29:26-infuse
29:26into his body and that stops his condition progressing. It's been very significant for him.
29:32His skin is much looser. He can straighten his legs out. He walked a lot on his tippy toes so
29:37his legs
29:38were bent. I feel much better. I feel energised. I feel like I'm hyped. I feel very happy. I was
29:45the
29:45first one to have it in the world so it was very exciting for trying it out. Considering everything
29:52he's gone through he just goes on living life like he's normal. If you could call it that. I think
29:59he's
29:59pretty courageous. Takes everything on especially someone with you think of his ability. It really
30:08proves everyone wrong. My mum and dad did everything they can to making me think about all the good
30:16things in my life. I'm just very sad that people can have so much fun without me playing sports that
30:24I can't do and I just being on the sidelines just watching them have fun. I just want to be
30:31stronger.
30:32You're the strongest person I know. You know I'm like good at sports. You are good at sports.
30:39Like I could play with my brother. I'm never getting hurt.
30:46It's all right. I still do plenty of stuff like doing sports playing soccer. Running?
30:52I'm running. I do running. I got to stay cross country last year. I got to throw food for
30:58come a second. So I'm doing a lot of things. Are you worried about hurting yourself?
31:03No, I'm not. I'm not. I'm very strong and I don't care. I'm going to do whatever it takes.
31:25I actually first met Harrison about six years ago when he was at the Royal Children's. I was a nurse
31:31there and then I've been his support care worker the last year. We hang out a couple of times a
31:37week.
31:37We just try to hang out and have fun and also we go to physio, osteo. Today we're going to
31:42a physio class.
31:43The therapy Harrison receives every week. He'll get a massage with the osteo and then he has
31:49exercise class with May just to keep his body flexible and moving.
31:54Do people ever say anything negative to you about your condition?
31:59Some people stare at me in public. Most of the kids, even teenagers stare at me sometimes. A lot of
32:06adults do it. They don't just have a quick look. They like fully, fully stare and it's like I just
32:12find it really rude. I get it. They're interested and talk to him. You don't have to just stare at
32:18him and make him feel uncomfortable. Why do you look weird? That's what mostly people say to me.
32:24Why does she handle like this? Why do you have bandages on? Like all of those. I keep telling
32:30them that I have a condition but they won't listen. They don't understand what I'll go through.
32:36Yeah, it's confronting sometimes but we just get on with it, don't we?
32:43Yeah. If you see a disability, don't stare at them. Don't call out names. Just please don't do
32:51that. Be kind. Just be kind. How hard is it? How's your body feeling today? Good. Good? Are your feet
32:59okay? They're not too sore today? No. He's getting a lot stronger and he's had a bit of a few
33:06ups and
33:06downs the last kind of 12 months with pain but he's been able to maintain his strength and his
33:12fitness and exercise capacity which is something that we're starting to work on a little bit more
33:16now. It's about prescribing exercise specific to the condition. So for H it's about keeping him
33:22mobile, keeping him strong, keeping him active for as long as possible and having a bit of fun while we
33:28do it. So I just love playing soccer. That's my main sport and I really hope that Christiana and Neil
33:35I love you. How proud are you of Harrison? Don't cry. Super proud. He's an incredible person after all
33:54he's been through. He still smiles and lights up a room and I just wish everyone could just take a
34:04page
34:04out of his book because he makes life look easy and it's not for him. But you wouldn't know.
34:14Just love you. People love you.
34:20I just love helping people, taking care of people and all of that. What would you like to tell other
34:27kids who have severe conditions as well? Just please don't give up. We got this. I'm here for you.
34:41Let me say action. Action.
34:45This sucker is too good. This is my son Raiden and he was born with Pfeiffer syndrome. Pfeiffer
34:51Pfeiffer syndrome is a genetic condition that fuses his bones before he's born and so that has affected
34:58how he eats, breathes and functions every day. Pfeiffer syndrome does not have a cure. It is a
35:04genetic condition. One in 100,000 children are born with this every year. This is Raiden's ventilator and
35:10to keep him completely healthy, we change these things weekly. We want to make sure this filters as
35:16clean as possible because that's essentially what's sending the clean air to Raiden. Raiden is a typical
35:23toddler so he thinks it's funny to disconnect from his vent and it will do that, what you're hearing.
35:30Raiden has the most severe type of Pfeiffer syndrome, type 3, which has affected his airway. He doesn't
35:36have a complete nasal passage, which is called nasal atresia. He is connected to a ventilator 24-7.
35:43And without the vent, Raiden wouldn't be here. I mean, he would not be able to breathe on his own
35:49at all. So the vent has given us independence and life in general, but we are working on sprinting
35:55trials where we would take him off the vent for a minute or two at a time to get him
36:00used to taking
36:01that breath by himself without the vent initiating it. Pop it off of here and then he's good as new.
36:09Let's go. My labor was terrifying. We noticed immediately that something was wrong.
36:16He was unable to breathe. So our doctors kind of told me, in order for your son to survive,
36:21he's going to need many surgeries. He's going to need an artificial airway.
36:25Life is going to look very different for him. Is that something you want to pursue?
36:29Or we can place him on hospice and he can pass comfortably here in your arms.
36:33And without a doubt, I just said, no, we're going to fight for him and we want him here with
36:39us.
36:39We chose life for him. This is actually what Raiden looked like before any surgeries.
36:45His skull was very different. So Raiden's very first surgery. He was five days old.
36:50They took pieces of his skull out. So you can see his head has already changed dramatically in the shape.
36:57And this kind of shows all of the hardware that's in his skull. So this is the space, essentially,
37:04that they're creating. Sadly, all that space had grew back together and he had like a bone protruding
37:11right here in the front of his forehead. And so we had to repeat the surgery.
37:14And this was after his second FOA. He was so swollen.
37:20It's just crazy to think we'll be doing the same surgery in just a few weeks and we'll be in
37:25the same
37:25position again. We're repeating it for the third time in hopes that we get enough space and eye
37:30coverage to hold off till his mid-face in a few years. Essentially, it's to give his eyes more
37:37protection and bring his eyebrow bone forward so it will change his appearance drastically.
37:42What's the first thing that comes to your head when you look at these photos?
37:48That it's not fair. But he's just so strong. I remember them saying like,
37:55it will get easier as the time goes on. And it hasn't because he's older. He recognizes things now.
38:00We pull up to the hospital and he'll say, no, no, no, no. And so now he wants me to
38:04hug him and,
38:05you know, take him home. And I can't do that. Our most important thing for Raiden is that he feels
38:11like
38:11we did everything that we could for him in the end, really. Let's put our stuff on. We've got to
38:18get our socks and our shoes on. So these are called AFOs. And so we put these on when we're
38:23doing any weight bearing or physical activity to keep his feet safe and strong. So Raiden is
38:30developmentally delayed in all aspects. A lot of that has come from surgeries and being hospitalized
38:36and sickness. Right now, he's developmentally about a one-year-old. He does therapy six hours a week.
38:42He has limited mobility in his neck. So this exercise is trying to get him to look upwards and extend
38:50those muscles. So he's going to reach forward and then set it up on top of the next block. Okay,
38:55now set it up here.
38:56Up. Good job. Push. Push, push, push. Good job. This takes a lot of coordination, weight bearing, balance.
39:08Can you kick with your foot? Good job. That was good. We were actually told that he might not be
39:15able to
39:16walk when he was around one years old. And on his second Christmas, he started walking independently.
39:22Yay! I was in shock. You can hear in the video, I start screaming because I was just like,
39:27this isn't happening. And he took off from there. He just never slowed down. I would like Raiden to be
39:32fully independent and take care of himself and be mobile and be able to be off the ventilator.
39:37And I think that in of itself is going to give him a lot of independence.
39:43Let's sit down and eat. Up, up, up. With all of his organ issues and just his mouth alignment,
39:49we put him in feeding therapy. Raiden eats by mouth for pleasure, not for nutrition.
39:54So he still gets all of his normal feed by tube. And that's how he'll get his nutrition for lunch.
40:02Okay. Enjoy your lunch. We're going to put our ears on for a little bit, okay? Yep. Ears on for
40:13a little bit.
40:13Okay. So we do have to just watch and be careful that he's being safe while eating. And that means
40:19take a lot of breaks so he's not fatiguing and giving him soft foods that he can eat.
40:24Yeah.
40:26You want more? More to eat?
40:29Eat? More eat? Okay.
40:34Okay. So he didn't start making sounds until a little over a year old. We teach him to try and
40:41make verbal commands with his mouth. It is very difficult. And so we practice our sign. Can you
40:48say thank you? Do it with your hands. Say thank you. Yeah. Thank you. Nice manners.
40:57Okay. You're okay. Okay. Okay. Okay. Okay. My oldest son is Julian. He's 13. Julian took big brother
41:07duties to the extreme. I mean, we call him second mom around here because he knows how to do everything.
41:12He changes his diaper. He helps his G2 feeds. He gets his meds ready. He does all of the things
41:18that
41:18Raiden needs on a daily basis and he takes pride in it. He's our baby.
41:26I probably love how honored he is as much as it can make me annoyed sometimes. It's fun because I
41:32get to have that brotherly love with him. I love you. I love you. I love you more.
41:42You want to go ride? Let's go.
41:52This car was built specifically for him and his needs and how the car will hold his vent and his
41:58speeding tube. Raiden!
42:02When did you start making videos and posting on TikTok? I first started in desperate need for
42:08prayers for Raiden when he was extremely sick and I expected, you know, a few comments here and there
42:14to give us that support. And I actually received the very opposite and people just attacked me to
42:20where I had to delete my video. I've been called selfish for keeping my son alive. I'm exploiting him.
42:28Raiden, he's been called terrible, mean things, ugly, creepy, creature, monster.
42:34It's just the lack of knowledge and the lack of awareness. I thought about it again. Raiden deserves
42:41to share his story and he deserves to be seen just as anybody else. And I showed a happy video
42:46of him
42:46and the response was very different. The support is just outrageous. Like people all over the world
42:52love my son and have actually told me that Raiden is a hero in their life because if he can
42:57get through
42:58the things that he's fighting that they can get through theirs as well, it's just, it's amazing.
43:03Overall, I just feel so proud that I'm his mom. I do wish that Raiden didn't have to endure all
43:10the
43:10things that he has endured, but I would never wish that Raiden was different than who he is today
43:17because I couldn't imagine a Raiden that's not Raiden. Despite everything that's been thrown Raiden's way,
43:23he is an absolute fighter. I just want people to kind of realize it's okay to look different, be
43:28different, sound different. I'd love for him to do all of these things that he's very limited that
43:33he can't do now. I hope that he goes to school and goes to college and can play sports and
43:38live on his
43:38own. And so those are things that, you know, we hope to see in the future and just take it
43:43one day at a time.
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