How’s it going everybody today, we are going to meet the little boy whose skin grows too fast This is a very comparable to what when the lizard almost sheds Having known then so this boy has something very similar the skin girls too fast and actually sheds very frequently yes This is a severe skin disorder. It is a genetic disorder. That’s inherited at birth That’s a little boy that has a genetic disorder as you can see he always has a very new skin because the old skin all Sheds off and that’s why it’s a little pinkish. Okay, cozy snuggly yeah You want to put your sweater on It is a condition that affects his skin And it makes it very very thick And scaly ever since evam has been born we you know knew right away that there was no cure, and there were only treatments So I actually have a friend that has a skin condition. It’s not nearly as severe. It’s just eczema which is very common I think I think gives him like a lot of insecurities to be honest. He doesn’t show it but like sometimes He would get outbreaks, and he would actually try to hide it with like clothing. This kid seems Happy still young, but I feel like as he grows up. It’s gonna be very tough for him There’s some people that just can’t handle when other people I just they just look different, and uh yeah that causes a lot of bullying I just hope that doesn’t happen to this kid Evan was diagnosed two days prior to birth We have never heard of thick theosis prior to hearing it from the doctors before he was born It was hard because we really didn’t know what to expect And it was scary just hearing the information That was available at that time in 2010 hearing that a lot of babies might not survive. I remember Looking at him though. He was covered up. It was just a relief for me to see his tummy go up and down Evan is the only one in his family who suffers from EG, OSIS Right now I’m noticing like he doesn’t grow hair I don’t know it may be part of skin condition or maybe maybe they’ve been taking the hair out for some reason I don’t know his skin has to be moist all the time to prevent the shedding it Which is why he looks pretty oily because I always put cream on him There’s no cure for the condition so evan follows a strict regime to manage its Simpsons the bathing process is really important for people with ichthyosis because Their skin is growing ten times faster, then oh crap ten times faster Can you guys just imagine that to be honest when I was younger? I had a really bad dandruff problem I had to use like this special tar shampoo Which really helped to relieve the dandruff like I stopped having it after I used tar shampoo, and I thought it was pretty bad Cuz it would like go all over the place when I would play on my hair and stuff so Imagine ten times faster than that we bathed him because we need to exfoliate his skin We need to make sure his skin stays clean since his skin is at risk of infection everything has to be very clean and sanitary the amount of skin that comes off is and absolutely crazy Since his skin is so severely dry he needs to be coated and drum soon emollient to prevent it from cracking her ripping and it’s a More of a protective barrier. He’s usually very happy and giggly when he gets aquaphor. Okay, arms up behind this guy Okay, can you stay still please hear me and silly he? Can’t sweat, so He can overheat very easily he can go and heat stroke very easily he can have seizures like That we’re constantly pushing Fluids drinks food as much as we can just to keep him up on the calorie intake the parents are amazing they work So hard to make sure everything’s okay with him to be honest. I I do feel like extremely bad Especially when as he grows up? He’s gonna have to take care of himself this way and it’s gonna be extremely difficult You guys know anyone with this skin condition Let me know down the comments if you know anybody maybe you have a relative, maybe it’s your brother sister or a friend Let me know how they handle like day to day with something like this because this seems like extremely difficult I can’t even imagine we were always a little bit nervous that we would have to get a feeding tube Just because of the infection risk with surgery He rarely complains about anything Evans condition can draw unwanted attention There’s been instances where people have made bad comments, and you do your best to Stay positive they would never want Evan to feel uncomfortable going out in public He does sometimes seem to be a little shy when he noticed people staring at him I don’t want him to react negatively I would rather live a positive lifestyle and not let some stranger who Was being rude who ruined his day guys obviously very unfortunate like I said since he’s a kid he’s still very happy He just lives day-to-day his parents are doing the best they can for him, but if you guys want to watch the whole video It’s gonna be in the description first link. I’ll take you to the whole video. I only look at some of it It’s actually almost five minutes, but yeah guys that’s gonna wrap it up at the meet the person series if you have any more suggestions of Strange things like this just our reaction time videos gmail comm show you out some more videos in the meantime That’s gonna wrap it up for the video I hope you guys saw something different today than what you used to seeing and maybe you’re more thankful for being a healthy But that’s gonna wrap it up guys. I’ll see you next time. Have a good one and peace out!