“I’m one of many young kids being diagnosed with this disease every year” – Tyce’s story

Tyce speaking at CCA’s parliamentary event as part of Awareness Month.

Tyce shared his story at an event at Parliament House in Canberra on May 30, which was focused on #savingkidsguts. See a lightly edited version of his speech below.

Tyce’s speech

My name is Tyce Khalil and I’m 13 years old.  I’m in year eight at Namadgi school. In December 2019, when I was nine years old, I was diagnosed with Crohn’s disease. It was around the time of the bushfires in the ACT, New South Wales and surrounding areas, and the COVID-19 lockdown was about to start. 

One morning, I woke up and noticed some blood when I went to the toilet. I told my mum, and she took me to the doctor the next day. When we were there, the doctor couldn’t figure out what was going on, so they referred us to a specialist.  About a week later, we had another appointment, and the specialist suspected it could be Crohn’s disease. They weren’t sure, so they conducted a colonoscopy and endoscopy.

I remember sitting in the waiting room thinking, “when is this going to be over?” When it was finally my turn, I got changed into a robe and was lying in the hospital bed. I saw other kids going in and wondered what they were getting a colonoscopy for? The doctor finally called my name, and they took me into the room. They put the mask on me, and gas started coming out. My eye lids were getting very heavy and before I knew it, I fell asleep. I woke up all confused, not knowing where I was or what had happened. The minute I got home I fell asleep and slept for a very long time.

A few days later, I had my first doctor’s appointment on Xmas Eve at the children’s hospital here in Canberra with Dr Chan, who has been amazing in helping me deal with my Crohn’s Disease diagnosis. Dr Chan requested further testing to confirm the diagnosis. As it was the Xmas holiday period, she was happy for us to have the family holiday that we’d already planned down the coast, and I would commence treatment as soon as we got back. While we were down the coast, the bushfires got out of control, and we had to evacuate our home on New Years Eve to the evacuation centre in Moruya.

While we were at the centre, Dr Chan called my parents to confirm the diagnosis and advised that I would need to start treatment as soon as we were able to safely return home. Luckily, we were able to leave the coast the next day and thankfully got home safely. We saw Dr Chan not long after returning, where she advised that I would need further testing. This involved having MRI scans, X-rays and blood tests every 2 weeks. My initial treatment started shortly after, involving an eight week liquid diet — of juices and shakes. This was very difficult as I wasn’t allowed to eat any solid food. After five weeks it was decided that I would start a course of steroids to complete the treatment, as I was unable to finish the last three weeks of the liquid diet. As hard as this treatment was on me and my family, I was lucky that it got my disease in remission.

I was then put on different medications to help keep my disease in remission. Currently, I take medication twice a day, which I find hard and don’t like doing, and I have blood tests every three months, before my appointment with Dr Chan. I’m happy I get to see Dr Chan for my appointments in Canberra, as when I was first diagnosed there was a chance that some of my appointments were going to be in Sydney and I didn’t really want to spend all that time travelling in the car.

I’m happy my disease is currently under control; however, my hope is that one day soon there will be a cure, so I don’t have to keep taking medication for the rest of my life. I also hope that other young kids won’t have to go through what I’ve gone through either.

Personal reflections

Having Crohn’s disease isn’t something that I like to talk about and tell people, so when my parents asked me to speak at Parliament House for Crohn’s and Colitis Awareness Month, my initial thought was ‘no way! My Mum told me to have a think about it before I made a decision. I took  a couple of days, and all I could think about  over that weekend was how I could help so many kids who were struggling, by telling my story. I decided I would it. 

It took me months to write my speech, and weeks to practice it. I was beginning to get a little nervous during the week of the Parliament event, but the day I had to do my speech was when the nerves really started. When we got to Parliament House that morning, I was sitting in the crowd and I was so scared. I wasn’t sure when it would be my turn. Finally they called me up and I was worried that I was going to mess it up, but I was so glad when I finished.

I was proud of myself for finally being able to stand up and tell my story. I hope it has made a small difference in helping to raise awareness about this disease that I, and so many other children, live with everyday. 

Tyce spoke at CCA’s Awareness Month event at Parliament House, where we shared recommendations and findings from our IBD Paediatric Quality of Care reports. CCA thanks Tyce, and our other Awareness Month Champions for fearlessly sharing their stories.

Click here to share your story.

CCA supports vital, IBD research. You can contribute to our research appeal here.