The Complete RED Survival Guide

RED Survivors

My History
About RED
Basic Tips
RED Survivors
Food and Diet
Email Diary
Contact Me
Welcome to the latest edition to the website!  If you have been through RED or any other craniofacial procedures and are willing to have your story posted, please contact me

"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, Charleston, SC      10/19/07

"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."  - Holly, Queensland, Australia