I am lying beside my baby at 3am. I can hear his rapid breathing and feel his racing heart. He seems more relaxed when I am here, or maybe it just makes me feel better. My first born baby is 10-years-old. Five days ago he was diagnosed with ulcerative colitis.

What started out as constipation 10 weeks ago has gradually progressed to where we are today. I have watched my boy become paler and more lethargic. He walks with shoulders stooped as he tries to guard his sore abdomen. He goes to the toilet at least 12 times a day to pass diarrhoea and blood. He is anaemic and off his food. He cannot concentrate in school.

Five days ago he underwent a gastroscopy and colonoscopy to tell us what in my heart and head I already knew. He has a form of Inflammatory Bowel Disease (IBD) and there is nothing I can do about it. I can only watch and remember. I remember a girl with similar symptoms just a little bit older than him. I remember the fear she felt and the lack of understanding in the community and medical profession about a disease process that occurred silently and deep inside. As today I watch him take a handful of tablets, I remember how that made the young girl feel all those years ago.

That girl was me. I grew up with Crohn’s disease and eventually the management was major surgery. My heart breaks at the thought that I passed this onto my child. But my head knows that what matters now is the road ahead and getting on with life and praying for a cure that will take the pain and suffering away.

Over 70,000 Australians may not be many in the grand scheme of things, but one of them is now my son and that is all that matters to me.