hard to see in a list

The following is a post I just made on the CHARGE Syndrome forums. Crazy to think of all the things our little guy has battled, is battling, and will continue to battle for as long as God keeps him here on this earth. I was talking to a friend and she said, "I'm sure even the other charge moms feel bad for you guys!" She meant it with only good intentions, and I think I have to AGREE!! Each breath Malachi breathes is a victory--a small victory, but a victory nonetheless! I find peace in the fact that God knows Malachi to his very core and loves him more than I can even begin to imagine. I can only trust that He has BIG plans for furthering His kingdom through the life of our fighter! There is no other reason that He has protected Malachi thus far.

Malachi has the following things associated with his CHARGE Syndrome. Can
anyone direct me to other chargers with an overall similar condition? I
understand that there are some who didn't make it for long, I would still be
interested in hearing their stories as well.

*Colobomas of the optic disk (blurred vision/blind spots--hard to evaluate at
this age).
*Heart defect (initial diagnosis of aortic atresia, ASD, and VSD. Had a stage 1
norwood repair with sano shunt. had a later surgery placing a BT shunt to help
with pulmonary bloodflow. will have a heart "repair" at age one)
*Atresia (aortic atresia, esophageal atresia with tracheoesophageal
fistula-repaired, bilateral choanal atresia)
*Genital abnormality (micropenis, undescended testes)
*Ear deformity (outer, middle, and inner ear abnormalities deaf or hard of
hearing)
*Kidney abnormality (VU reflux)
*Brain abnormalities (severely thinned corpus callosum, bilateral frontal lobe
bleeding, atrophied white matter, probable moderate mental retardation).
*Seizures from prolonged hypoxemia.
*Missing thymus (probable immune deficiencies)

(those are just the "major" things)

Thanks for any input!