The Troupe’s are a homeschooling family of seven living in the Western Michigan area. Kevin and Theresa have been married 24 years and have three girls and two boys. Our youngest is 4, our oldest is 21. The content on this blog is an insight into living with a child or sibling with special needs and the challenges and special joys that are presented to us. Our prayer is that you would find the strength to care for those who are in your life by reading about our journey of raising our unique family.
Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey
This is a Blog going back 7 years I am told by a Father.
CHARGE Syndrome affects approximately 1:10,000 births worldwide, is extremely complex and has varied medical and physical manifestations. It was first described in 1979, named in 1981, and only as recently as 2004 was a gene for CHARGE found. In addition to a host of other conditions, most individuals have communication-related problems, including breathing, swallowing, hearing and balance, and speech.
CHARGE is a recognizable pattern of physical anomalies that us useful for the diagnosis and can be confirmed by a genetic test.
There are four “major” anomalies that are commonly referred to as the four “C”s of CHARGE. These “C’s” are Colobomas of the eyes (an eye defect), Choanal Atresia (sinus), Cranial Nerve issues (swallow, facial palsy, smell, taste, etc.) and Characteristic Ear (can be outer ear, middle or inner or any combination of the three).
In the “minor” tier of anomalies, which are less specific to CHARGE Syndrome, can include the following; heart defects, cleft lip and/or palate, Esophageal atresia, Trancheo-esophageal fistula (TEF), H-shaped TEF, kidney abnormalities, genital abnormalities, growth deficiency, typical CHARGE face, palm crease and typical CHARGE behaviors.