Benito "Benny" was born on June 4th, 1997 with Crouzon syndrome. He is our second child, the first is a "typical" little girl. The syndrome in our case happened sparatically (not inherited). Benny has the typical features including shallow orbits (big eyes), beaked like nose, small chin and retruded middle facial bone area. We believe he has normal intelliegence since he is hitting all his "milestones" and developing wonderfully. The only challenge is his breathing since he has small nasal passages. This makes is difficult for him at night and tends to wake up quite frequently. We are looking into having a sleep study done soon.
Benny has had one surgery thus far which straightened his big toes. This is not a typical operation for Crouzon children. He is scheduled for his first craniofacial surgery this summer. His neurosurgeon Dr. Ragheb will open the fused sutures and move his forehead forward which will ultimately protect his eyes from trauma. Dr.Wolfe his plastic surgeon will close up the skull and will do his best to make it look "normal".
Benny is a great child. He is happy and very loving. We love and adore him. Our thoughts from the beginning have been, to do whatever it takes for Benny to have the best possible life he deserves to have. His family and friends have been very supportive and Penny's Support Network has been a terrific outlet. Thanks.
Margaret Infantino, Benny's mother in Florida
Benny at 3 months old
Benny's Baptism at 3 months old
Benny at 6 months - Christmas '97
Benny at 9 months old with his mother (Margaret)
Benny at 9 months old
Benny is walking at 11 months old - May '98
Information and support for individuals and families
affected by Crouzon Syndrome and related craniofacial anomalies