WHAT IS APERT'S?Apert Syndrome is a genetic disease that causes a disturbance in the formation of the skull. Babies with Apert's experience oddly shaped faces and heads. It also causes other birth defects, such as syndactyly, which is the fusion of fingers and toes.
|
LIFE WITH APERT'S
Those who have Apert Syndrome are born with it. Apert syndrome cannot be seen clearly on ultrasounds, so when the child is born, it is usually a huge shock to the parents. Babies with Apert's have a very good survival rate, they are just in for a hard life. Within the first two years of the baby's life they endure many surgeries to fix the structure of the head and face, separate the fingers and toes, and other important procedures. As the child grows up, they will also have more surgeries as the need arises. Those with Apert's usually need to do breathing treatments regularly and most attend speech and occupational therapy. In addition, some have learning disabilities, and all look very different from other people. This does not discourage those with Apert Syndrome from living life to its fullest!
|
APERT'S EXPLAINEDProfessor David Dunaway gives an in-depth explanation of Apert Syndrome.
|
KIDS WITH APERT SYNDROME
Aiden Skees
Aiden is a very happy, self confident 5-year-old (as of 2013, he is 10 now) with Apert's. He has gone through many surgeries to give his brain more room, and to separate his fingers and toes. Aiden lives with his parents and older brother, Ethan. |
Henry Johnson and Derek Coleman
Henry and Derek both have Apert Syndrome. They met in kindergarten when they found out that they had the same scars on their heads. This led to a very strong bond between the two boys. Combined, Henry and Derek have had over 20 surgeries (as of 2009), but they are both extremely energetic. |
Daryl (last name unknown)
Daryl is a young man who was born with Apert Syndrome. He was operated on many times, most of which by Dr. Sargent, who works with the Craniofacial Foundation of America. Daryl's mother said in an article that Daryl is very well-adjusted and happy. |