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Our son, Raiden, has had 30 surgeries and 14 on his skull alone
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This is actually what Raiden looked like before any surgeries. When Raiden was born, he was unable to breathe, so our doctors asked if we wanted to keep him alive
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or if he can pass comfortably. Without a doubt, I just said no
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I've been called selfish for keeping my son alive. alive. He's been called terrible mean things, ugly, creepy, creature, monster. Despite everything
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that's been thrown Raiden's way, he's an absolute fighter. Raiden deserves to share his story
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and he deserves to be seen just as anybody else. Action! The sucker's too good. This
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is my son Raiden and he was born with Pfeiffer Syndrome. Pfeiffer Syndrome is a genetic condition
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that fuses his bones before he's born and so that has affected how he eats
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breathes, and functions every day. Pfeiffer syndrome does not have a cure, it is a
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genetic condition. One in 100,000 children are born with this every year
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This is Raiden's ventilator and to keep him completely healthy, we change these
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things weekly. We want to make sure this filters as clean as possible because
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that's essentially what's sending the clean air to Raiden. Raiden is a typical
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toddler so he thinks it's funny to disconnect from his vent and it will do that what you're hearing
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radon has the most severe type of fiefer syndrome type 3 which has affected his airway
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he doesn't have a complete nasal passage which is called nasal atresia he is connected to a
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ventilator 24 7 without the vent radon wouldn't be here i mean he would not be able to breathe
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on his own at all. So the vent has given us independence and life in general, but we are
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working on sprinting trials where we would take him off the vent for a minute or two at a time
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to get him used to taking that breath by himself without the vent initiating it
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Top it off of here. He's good as new. Let's go. My labor was terrifying. We noticed immediately that something was wrong. He was unable to breathe
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So our doctors kind of told me, in order for your son to survive
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he's going to need many surgeries, he's going to need an artificial airway
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life is going to look very different for him Is that something you want to pursue Or we can place him on hospice and he can pass comfortably here in your arms And without a doubt I just said no We going to fight for him and we want him here with us
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We chose life for him. This is actually what Raiden looked like before any surgeries
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His skull was very different. So Raiden's very first surgery, he was five days old
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They took pieces of his skull out. so you can see his head has already changed dramatically in the shape and this kind of shows
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all of the hardware that's in his skull so this is the space essentially they're creating sadly all
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that space had grew back together and he had like a bone protruding right here in the front of his
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forehead and so we had to repeat the surgery and this was after his second foa he was so swollen
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It's just crazy to think we'll be doing the same surgery in just a few weeks and we'll
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be in the same position again. We're repeating it for the third time in hopes that we get enough space and eye coverage
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to hold off until his midface in a few years. Essentially, it's to give his eyes more protection and bring his eyebrow bone forward so it will
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change his appearance drastically. What's the first thing that comes to your head when you look at these rooms
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That it's not fair. But he's just so strong. I remember them saying, like, it will get easier as the time goes on
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And it hasn't because he's older, he recognizes things now. We pull up to the hospital and he'll say, no, no, no, no
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And so now he wants me to hug him and, you know, take him home. And I can't do that
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Our most important thing for Raiden is that he feels like we did everything
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that we could for him in the end, really. Let's put our stuff on
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We've got to get our socks and our shoes on. So these are called AFOs, and so we put these on when we're doing any weight-bearing or
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physical activity to keep his feet safe and strong. So Raden is developmentally delayed in all aspects
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A lot of that has come from surgeries and being hospitalized and sickness
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Right now, he's developmentally about a one-year-old. He does therapy six hours a week
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He has limited mobility in his neck. So this exercise is trying to get him to look upwards
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and extend those muscles. So he's gonna reach forward and then set it up on top of the next block
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Okay, now set it up here. Up Good job push Push push push Good job This takes a lot of coordination Weight balance
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Can you kick with your foot? Good job! That was good! We were actually told that he might not be able to walk
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when he was around one years old, and on his second Christmas
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he started walking independently. I was in shock. You can hear in the video I start screaming
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because I was just like, this isn't happening, and he took off from there
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He just never slowed down. I would like Raiden to be fully independent and take care of himself and be mobile
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and be able to be off the ventilator, and I think that in and of itself
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is gonna give him a lot of independence. Let's sit down and eat
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I love it. With all of his organ issues and just his mouth alignment
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we put him in feeding therapy. Raiden eats by mouth for pleasure, not for nutrition
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So he still gets all of his normal feed by tube, and that's how he'll get his nutrition for lunch. Okay
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Enjoy your lunch. We're gonna put our ears on for a little bit, okay
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Yep, ears on for a little bit. So we do have to just watch and be careful
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that he's being safe while eating, and that means take a lot of breaks
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so he's not fatiguing and giving him soft foods that he can eat. Yeah
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You want more? More to eat? More. Eat? More eat? Okay. So he didn't start making sounds until a little over a year old
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We teach him to try and make verbal commands with his mouth
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It is very difficult, and so we practice our sign. Can you say thank you
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Let's do it. Do it with your hands. Say thank you. Yeah
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Thank you. Nice manners. Okay. You're okay. Okay. Okay. Okay. My oldest son is Julian
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He's 13. Julian took big brother duties to the extreme. I mean, we call him second mom around here
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because he knows how to do everything. He changes his diaper. He helps his G2 feeds
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He gets his meds ready. He does all of the things that Raiden needs
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on a daily basis and he takes pride in it. He's our baby
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I probably love how honored he is. As much as it can make me annoyed sometimes it fun because I get to have that brotherly love with him I love you I love you I love you more you want to go ride let go
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this car was built specifically for him and his needs and have the car will hold his vent and his
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feeding tube. Raiden! When did you start making videos and posting on TikTok? I first started in
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desperate need for prayers for Raiden when he was extremely sick and I expected you know a few
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comments here and there to give us that support and I actually received the very opposite and
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people just attacked me to where I had to delete my video. I've been called selfish for keeping my
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son alive, exploiting him. Raiden's, he's been called terrible, mean things, ugly, creepy, creature
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monster. It's just the lack of knowledge and the lack of awareness. I thought about it again. Raiden
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deserves to share his story and he deserves to be seen just as anybody else. And I showed a happy
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video of him and the response was very different. The support is just outrageous. Like people all
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over the world love my son and have actually told me that Raiden is a hero in their life because
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if he can get through the things that he's fighting that they can get through theirs as well
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it's just it's amazing. Overall I just feel so proud that I'm his mom. I do wish that Raiden
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didn't have to endure all the things that he has endured but I would never wish that Raiden was
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different than who he is today because I couldn't imagine a Raiden that's not Raiden. Despite
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everything that's been thrown Raiden's way. He is an absolute fighter. I just want
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people to kind of realize it's okay to look different, be different, sound different. I'd love for him to do all of these things that he's very limited that
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he can't do now. I hope that he goes to school and goes to college and can play
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sports and live on his own and so those are things that you know we hope to see
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in the future and just take it one day at a time
