THREE-YEAR-OLD Raedyn was born with a rare genetic condition known as Pfeiffer syndrome. The condition caused Raedyn's skull bones to fuse together earlier than they should have in the womb, meaning he was born with a visible difference. More alarmingly, at birth, Raedyn's airway was blocked - he was unable to breathe and had to be placed immediately on life support. Mom Natasha recalls how "doctors asked if we wanted to keep him alive... Or he can pass comfortably here in your arms." There was no doubt in the parents' minds: "I just said, 'No, we're going to fight for him and we want him here with us'." Raedyn had a trach placed so that he could continue to receive ventilation support and Natasha and Rufus (Raedyn's dad) began working with doctors to ensure their son had the best prognosis possible. He has now had 30 surgeries, including 14 head reconstructions - and has another surgery on the horizon: a third attempt at bringing his eyebrow bone forward to protect his eyes. Seeing their son go through so many surgeries has taken a toll on Natasha in particular, but the amount of time in hospital has also meant that, three years later, Raedyn is "developmentally about a one-year-old." To help him progress and gain independence Raedyn is on various therapy programmes totalling 6 hours per week, which are paying off - at one point, doctors didn't expect him to be able to walk, but he took to his feet during his second Christmas and has not looked back since. Having overcome so much adversity, Natasha began documenting Raedyn's journey on TikTok to share the positive progress he was making - but she was shocked by some of the response. She and Rufus have been accused of being "selfish" for choosing life for Raedyn and comments have appeared calling him "ugly, creepy, creature, monster." It is therefore no surprise that Raedyn's 13-year-old brother Julian is so protective of him, standing up for Raedyn when people stare in public and also helping care for him at home. And with such a loving family around him, Natasha decided to defy the haters online and continue posting Raedyn's updates to tackle their ignorance head-on: "Raedyn deserves to share his story and he deserves to be seen just like anybody else. I just want people to realise that it's ok to look different, be different, sound different."
Follow Raedyn:
https://www.tiktok.com/@risewithraedyn
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Follow Raedyn:
https://www.tiktok.com/@risewithraedyn
https://www.facebook.com/profile.php?id=100069312505042
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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.