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Lochie’s Story


I had a beautiful pregnancy with my little Lochie absolutely perfect in every sense, even more so than with my first pregnancy 3yrs earlier with Lochie’s big sister Chloe. We went for our 20week scan, all excited to find out if we were having a boy or girl, and the look of the ultrasound technician’s […]

Patrick’s Story

Patrick's Story - CHARGE Syndrome

This story is about Patrick Egan, a 22 year old man with CHARGE syndrome. It is written by his parents, Tim and Dolly Egan, who just recently made contact with the Association and have become members. Prior to this, Tim and Dolly were unaware of our support group, or had access to any information on […]

Oscar Hudson’s Story

Oscar Hudson - CHARGE Syndrome

On 16th January 2004, Oscar came into the world, a little brother for his adoring siblings Connor and Yasmin. This day was to change our lives forever, as this little boy, unknown to him, was to achieve amazing things against all odds. When I was pregnant with Oscar, our ‘routine’ scan was to become anything […]

Cameron’s Cochlear Implant

Cameron's Cochlear Implant

To do or not to do? That is the question I often feel that it was easier when Cameron was a baby. Decisions, re medical interventions, were generally for life and death situations – had to be done, and often made by the professionals involved. Then when Cameron was about 3 years old, we heard […]

Raphael’s Story

Raphael's Story

My name is Paul Bartlett, my third child was born in 2006. We already had names selected for a girl or a boy and so we instantly know what to call him. Raphael Shalom Bartlett came into the world with raspy, gurgly breathing (stridor), a crooked mouth and a funny ear but that didn’t stop […]