Gidon Goodman

Apr 18, 2019 | Stories

Gidon was born in 2002 a seemingly normal healthy average sized baby. By 6 months Gidon had failed to reach his growth milestones and had gone from average size to below the 10th percentile. So started our journey to a diagnosis. Gidon had the typical Gaucher symptoms – enlarged liver & spleen, low platelets, anaemia etc. Gidon was initially diagnosed with leukemia but that was quickly discounted. He also tested positive for Celiac Disease so was sent to Prince of Wales Children’s Hospital for review. This was our first step in the hunt for a diagnosis.

Gidon did not have Celiac disease and so we were referred on to a haematologist. It was not until 2 years later that we finally had the diagnosis Gaucher Type 1 Disease. By this time Gidon, a tiny 3 year old, with an enormous stomach & very anaemic – had a name for his symptoms. We were relieved that the journey to diagnosis was over and we were blessed that there was a treatment available.

After applying to the Life Saving Programme, 3 months later Gidon finally started treatment. Listen to his story.