Jonathan was born with a condition known as CHARGE Syndrome.

CHARGE Syndrome refers to children with a specific set of birth defects. "CHARGE" originally
came from the first letter of the most common birth defects seen in these children: C = coloboma,
H = heart defects, A = atresia of the choanae, R = retardation of growth and development,
G = genital and urinary abnormalities, E = ear abnormalities and/or hearing loss.

The cause of CHARGE is not known. It is not known to be related to illness, exposure to drugs
or alcohol during pregnancy, and typically it does not occur to more than one person in a family.
It is very rare, and cannot be predicted. It is important however, to discuss risks for passing
CHARGE Syndrome to future generations with a trained geneticist.

Children with CHARGE require a great deal of medical management. There are often numerous
surgeries to repair heart defects, choanal atresia, the gastrointestinal tract, the esophagus, cleft lip
or palate, etc. Although many of these procedures are done when the child is a newborn, some of the
less life-threatening problems may not appear until later or may have to wait until later in the life of
the child to be addressed.

Jonathan has already undergone surgery for his heart and to correct other issues.
In July, Jonathan celebrated his second birthday and is doing well.

If you would like to find out more about CHARGE syndrome, please visit the
CHARGE Syndrome Foundation’s homepage