Shortly after his second birthday, Jessie Beals’ son Carson was diagnosed with a rare disorder. The now-3-year-old has been through multiple surgeries and treatments, and his family is looking to help spread the word about CHARGE syndrome.
According to the CHARGE Syndrome Foundation, CHARGE syndrome is a recognizable (genetic) pattern of birth defects, and occurs in about one in every 9,000-10,000 births worldwide.
It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Swallowing and breathing problems, hearing loss, vision loss and balance problems are among the conditions that delay the child’s development and communication. All are likely to require medical and educational intervention for many years.
The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems.
For more on Carson’s development and accomplishments, see the “Carson’s Story” Facebook page.
