Some of the characteristics of CHARGE Syndrome that Danny has:

Coloboma; This is an eye deformity where part of the eye has failed to develop properly and is missing. This may limit Danny’s ability to adjust to bright light, as the pupil is deformed and a blank area in Danny’s visual field.

Hearing loss: Danny has a sensori-neural loss because of missing auditory nerves.

Tracheoseophageal fistula: Danny’s oesophagus had a blind ending and he needed surgery to rejoin his oesophagus when he was born.

Upper body hypotonia. Danny has low muscle tone in the upper body, not helped by the surgery he needed for his fistula.

Missing Balance Nerves: Danny is very wobbly!

Just a few hours after Danny was born, we discovered that he couldn't feed and were told that he needed emergency surgery for TOF repair (Tracheo Oesophagul Fistula). After further surgery to repair a second fistula, we finally brought Danny home when he was 2 months old.

At 6 months old, we discovered that Danny was profoundly deaf, it didn't really sink in, even when the audiologists said he would not hear a jet engine if he was stood right next to it!  After further testing, Danny was found to have no auditory nerves. and his only hope of hearing is to have a Auditory Brain Stem Implant (ABI).
Following further tests, we found out that Danny has CHARGE syndrome.

Danny is the most amazing little boy, he is funny, happy, and so chilled out, he suprises us every day with his achievements; he can even understand our novice sign language attempts!