Rigid External Distraction survival
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I've certainly had many "why me?" moments over the years. The thing that gets to me the most is how quick people are to pass judgment and make assumptions about me based on the way I look. I have to work twice as hard as everyone else to receive respect, and it's incredibly frustrating.

However, in these moments I just tell myself to "stop complaining." I tell myself that I am incredibly fortunate to be where I am today, and I think about all that I've been able to accomplish- more than many "normal" people ever will. Basically, I just try to stay positive. My body may seem like a cage at times, but at least I have my mind to make up for it :)


Hi my name is Shea Freeman. I was born with Crouzon's syndrome, cleft lip and pallete, and another craniofacial disease. When I was 17 I had the halo attached to my head during the summer before my senior year. It was a very rough process and I had to wear it for 11 weeks (the whole summer). They broke my upper jaw into three and repaired it to give me an under-bite and pull mhy face forward. I'll admit, it caused a strain on me mentally for the first 2 weeks, but after a while I continued my summer without any problems. I was fortunate enough to have a brilliant doctor by the name of Mutaz Habal, who has been a mentor to me and has performed over 50-60 surgeries on me since I was 2 weeks old. I am 20 years old now and I can say that the apparatus has definitely improved my smile along with the structure of my face.

Although it didn't completely change my look, it doesn't really matter to me because I'm just as normal as the next person and now i feel that way. I never had a problem talking to people with it on. In fact, I met a gorgeous girl while wearing it and we dated for 2 years. I was unaware of the website and when I came across this I felt like I had to say something. Most people go their whole lives without telling the world how they feel and for kids with Crouzon's it can be very difficult to do that. Sometimes you can feel like you don't fit in or you're not normal or you don't even matter to other people, but I'm very proud of who I am and I wouldn't change a thing about me if I didn't have to. People with Craniofacial syndromes are not mistakes, or mentally handicapped, or sad stories. God made us this way because he wants us to get past it because he made us stronger than normal people. I don't wanna sit here and try to be a hero, because I'm not. I'm a regular guy who just so happens to have 3 syndromes that do not correlate with each other (it's been said to be a medical miracle that i lived), but I do wanna change the way people look at us and my only advice to parents or siblings or friends of someone that has these syndromes is simple: Just let them be themselves and don't shelter them. Remember, what doesn't break you, makes you. And I know in my heart that every kid with Crouzon's knows that and they all have the ability to do something extraordinary. All we gotta do is spread the word and educate people on it. Well I know this has been a rather long message, but I hope people read this and tell others about it. Thanks and God Bless

My daughter's name is Kelsey and she's a beautiful 7 yr. old that was born with Crouzon's. We are "RED survivors" with this being her, upon removal, 17th surgery. This experience was not exactly the "minimal pain" version we were told about. She hurt mostly upon cleaning the sights (very sensitive) and at night. The pain the first several weeks would wake her at night and because she got thrush in her mouth, giving pain meds was extremely difficult. I prayed my heart out on ways to help her. She tried to be so brave and laugh when she could, but I new she was struggling with pain. One side of her head in particular gave us a good bit of trouble with a topical infection and granuation tissue. She will need scalp reconstruction on that side because she's been cut from ear to ear three times. This story sounds really negative but I honestly felt like our surgeon did not prepare us for our particular situation, and down played it. Kelsey has proven that she is tough and has always rebounded quickly from all other surgeries but this one was different and I felt that it, as usual, was left soley up to me. Our results were good and she has the nasal passageway she needs, but found out her adenoids and tonsils will have to be removed as they are blocking the air (#18). I would like to say that it is a blessing that surgeries like this exist in our lifetime. We just need to be better informed about other possibilities other than protocol. We can handle it." - Kelly Charles
I have the RED on right now and are getting it off before christmas. Uuumm what can I say. the RED is not painful, but is just annoying. You can't run around, you can't eat or sleep that well either. I have stopped turning the screws and have 7 weeks to go!!! If anyone is going to have the RED but is not sure sbout it, DO IT!! Because its totally worth it. But remember, children with crouzons ARE beautiful and if some people are to dumb to see that then they are the idiots, not you
If you want to help your fellow craniofacial community members and share your experience, you would be a hero!  Please shoot me an email at Lia@REDsurvival.org so we can get started!  Hope to hear from you soon! 

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