First Name, DOB xx/xx/xx, Crouzon Syndrome (Please send a full-size photo)
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Alysia had her first surgrey when she was a year old. She had to have a trach put in when she was three months old. Since then she has grown into a beautiful little girl, stealing everyone's heart when they meet her. Alysia is a very smart, but sensitive little girl. She likes sports and loves all kinds of music. She also loves aniamals, and horses are her favorite.
Brenna, DOB 05/14/96, Crouzons Acanthosis Nigricans
Brenna was born with Crouzons Acanthosis Nigricans, a rare form of Crouzons. She has had about 40 surgeries before age 8. Brenna doesn't let her medical issues hold her back. She has a strong will to enjoy life to its fullest. She has been through it all, thick and thin. She LOVES anything with furry skin and four legs, art, music, soccer and softball, and is a demon on her ATV. God has a plan for this kid...watch out!
We first found out Justin had something wrong during a routine eye exam that showed his optical nerve was swollen. He then had a lumber punture which showed high pressures in the brain. His surgeries have included a chiari decompression and a VP shunt placement before the ages of two. He will have a frontal orbital advancement and a midface advancement with a halo device next year. Justin is a very active three-year-old.
Kasey had her first surgery when she was a year old. She had pressure on her optic nerve and sadly lost the majority of vision in that eye. Since then, she has grown into a beautiful young lady; Kasey is very smart, sensitive and so kind to others. She loves animals, and wants to be a doctor, when she graduates, she just hasn't figured out if she will be a people doctor or an animal doctor.
Bayleigh had her first surgery, to relieve pressure on her brain, when she was almost three years old. She is a very happy and active child. She attends preschool four days a week and daycare five. She never lets the Crouzons get in her way. All of the children have accepted her and love her goofy sense of humor. Her best friends are her three sisters.
Stepheny is the youngest of four girls. Her sister Bayleigh also has Crouzons. She is a really happy baby, but when she wants something you better jump to it. We are looking forward to seeing how she grows and how her personality changes. So far the only complications due to the Crouzons is constant congestion.
Information and support for individuals and families
affected by Crouzon Syndrome and related craniofacial anomalies