00:00Our son, Raiden, has had 30 surgeries and 14 on his skull alone.
00:08This is actually what Raiden looked like before any surgeries.
00:12When Raiden was born, he was unable to breathe, so our doctors asked if we wanted to keep
00:17him alive or he can pass comfortably.
00:19Without a doubt, I just said no.
00:21I've been called selfish for keeping my son alive.
00:25He's been called terrible mean things, ugly, creepy, creature, monster.
00:30Despite everything that's been thrown Raiden's way, he's an absolute fighter, and Raiden
00:34deserves to share his story and he deserves to be seen just as anybody else.
00:39Action!
00:40The sucker is too good.
00:45This is my son, Raiden, and he was born with Pfeiffer syndrome.
00:49Pfeiffer syndrome is a genetic condition that fuses his bones before he's born, and
00:54so that has affected how he eats, breathes, and functions every day.
00:59Pfeiffer syndrome does not have a cure.
01:01It is a genetic condition.
01:03One in 100,000 children are born with this every year.
01:07This is Raiden's ventilator, and to keep him completely healthy, we change these things
01:12weekly.
01:13We want to make sure this filters as clean as possible because that's essentially what's
01:17sending the clean air to Raiden.
01:20Raiden is a typical toddler, so he thinks it's funny to disconnect from his vent, and
01:26it will do that, what you're hearing.
01:28Raiden has the most severe type of Pfeiffer syndrome, type 3, which has affected his airway.
01:34He doesn't have a complete nasal passage, which is called nasal atresia.
01:39He is connected to a ventilator 24-7.
01:42Without the vent, Raiden wouldn't be here.
01:44I mean, he would not be able to breathe on his own at all.
01:48So the vent has given us independence and life in general, but we are working on sprinting
01:53trials where we would take him off the vent for a minute or two at a time to get him used
01:59to taking that breath by himself without the vent initiating it.
02:03Pop it off of here, and then he's good as new.
02:07Let's go.
02:10My labor was terrifying.
02:12We noticed immediately that something was wrong.
02:15He was unable to breathe, so our doctors kind of told me, in order for your son to survive,
02:20he's going to need many surgeries.
02:22He's going to need an artificial airway.
02:24Life is going to look very different for him.
02:26Is that something you want to pursue?
02:28Or we can place him on hospice, and he can pass comfortably here in your arms.
02:32And without a doubt, I just said no.
02:34We're going to fight for him, and we want him here with us.
02:37We chose life for him.
02:39This is actually what Raiden looked like before any surgeries.
02:43His skull was very different.
02:46So Raiden's very first surgery, he was five days old.
02:48They took pieces of his skull out, so you can see his head has already changed dramatically
02:55in the shape.
02:56And this kind of shows all of the hardware that's in his skull.
03:00So this is the space, essentially, that they're creating.
03:04Sadly, all of that space had grew back together, and he had like a bone protruding right here
03:09in the front of his forehead, and so we had to repeat the surgery.
03:12And this was after his second FOA.
03:14He was so swollen.
03:18It's just crazy to think we'll be doing this same surgery in just a few weeks, and we'll
03:23be in the same position again.
03:25We're repeating it for the third time in hopes that we get enough space and eye coverage
03:30to hold off until his mid-face in a few years.
03:33Essentially, it's to give his eyes more protection and bring his eyebrow bone forward, so it
03:39will change his appearance drastically.
03:47That it's not fair.
03:50But he's just so strong.
03:52I remember them saying, like, it will get easier as the time goes on, and it hasn't
03:55because he's older, he recognizes things now.
03:58We pull up to the hospital, and he'll say, no, no, no, no.
04:01And so now he wants me to hug him and, you know, take him home, and I can't do that.
04:07Our most important thing for Raiden is that he feels like we did everything that we could
04:12for him in the end, really.
04:15Let's put our stuff on.
04:16We've got to get our socks and our shoes on.
04:18So these are called AFOs, and so we put these on when we're doing any weight-bearing or
04:23physical activity to keep his feet safe and strong.
04:27So Raiden is developmentally delayed in all aspects.
04:30A lot of that has come from surgeries and being hospitalized and sickness.
04:36Right now he's developmentally about a one-year-old.
04:38He does therapy six hours a week.
04:41He has limited mobility in his neck.
04:44So this exercise is trying to get him to look upwards and extend those muscles.
04:48So he's going to reach forward and then set it up on top of the next block.
04:53Okay, now set it up here.
04:55Up.
04:56Good job.
04:57Push.
04:58Push, push, push.
04:59Good job.
05:01This takes a lot of coordination, weight-bearing, balance.
05:04Can you kick with your foot?
05:06Good job.
05:07That was good.
05:08We were actually told that he might not be able to walk when he was around one-years-old,
05:15and on his second Christmas, he started walking independently.
05:20I was in shock.
05:21You can hear in the video I start screaming because I was just like, this isn't happening.
05:25And he took off from there.
05:26He just never slowed down.
05:27I would like Raiden to be fully independent and take care of himself and be mobile and
05:32be able to be off the ventilator.
05:34And I think that in of itself is going to give him a lot of independence.
05:39Let's sit down and eat.
05:42With all of his organ issues and just his mouth alignment, we put him in feeding therapy.
05:47Raiden eats by mouth for pleasure, not for nutrition.
05:52So he still gets all of his normal feed by tube.
05:57And that's how he'll get his nutrition for lunch.
06:00Okay.
06:02Enjoy your lunch.
06:05We're going to put our ears on for a little bit, okay?
06:09Yep.
06:10Ears on for a little bit.
06:12So we do have to just watch and be careful that he's being safe while eating.
06:16And that means take a lot of breaks so he's not fatiguing and giving him soft foods that
06:22he can eat.
06:25You want more?
06:26More to eat?
06:28Eat?
06:29More eat?
06:30Okay.
06:35So he didn't start making sounds until a little over a year old.
06:38We teach him to try and make verbal commands with his mouth.
06:42It is very difficult.
06:44And so we practice our sign.
06:46Can you say thank you?
06:49Do it with your hands.
06:50Say thank you.
06:52Yeah.
06:54Nice manners.
06:56Okay.
06:57You're okay.
06:58Okay.
06:59Okay.
07:00Okay.
07:01Okay.
07:02My oldest son is Julian.
07:03He's 13.
07:04Julian took big brother duties to the extreme.
07:07I mean, we call him second mom around here because he knows how to do everything.
07:11He changes his diaper.
07:12He helps his G2 feeds.
07:14He gets his meds ready.
07:16He does all of the things that Raiden needs on a daily basis and he takes pride in it.
07:20He's our baby.
07:24I probably love how honored he is.
07:26As much as it can make me annoyed sometimes, it's fun because I get to have that brotherly love with him.
07:32I love you.
07:35I love you.
07:37I love you more.
07:39I love you more.
07:41You want to go ride?
07:43Let's go.
07:50This car was built specifically for him and his needs and how the car will hold his vent and his feeding tube.
07:57Raiden!
08:00When did you start making videos and posting on TikTok?
08:03I first started in desperate need for prayers for Raiden when he was extremely sick.
08:08And I expected, you know, a few comments here and there to give us that support.
08:14I actually received the very opposite and people just attacked me to where I had to delete my video.
08:20I've been called selfish for keeping my son alive, exploiting him.
08:26Raiden, he's been called terrible mean things, ugly, creepy, creature, monster.
08:32It's just the lack of knowledge and the lack of awareness.
08:37I thought about it again.
08:38Raiden deserves to share his story and he deserves to be seen just as anybody else.
08:44And I showed a happy video of him and the response was very different.
08:47The support is just outrageous.
08:49Like people all over the world love my son.
08:51They've actually told me that Raiden is a hero in their life because if he can get through the things that he's fighting,
08:57that they can get through theirs as well.
08:59It's just, it's amazing.
09:02Overall, I just feel so proud that I'm his mom.
09:05I do wish that Raiden didn't have to endure all the things that he has endured.
09:10But I would never wish that Raiden was different than who he is today.
09:14Because I couldn't imagine a Raiden that's not Raiden.
09:18Despite everything that's been thrown Raiden's way, he is an absolute fighter.
09:22I just want people to kind of realize it's okay to look different, be different, sound different.
09:27I'd love for him to do all of these things that he's very limited that he can't do now.
09:32I hope that he goes to school and goes to college and can play sports and live on his own.
09:36And so those are things that we hope to see in the future and just take it one day at a time.
Comments
2