Ryan’s Story

This is a story of a fit and healthy 11 year old boy. He was robbed of his life by a monster. A DIPG brain tumour. He didn’t get to do all the things I took for granted that he would do – finish primary school, go to high school, find love, get married, have children and lead a happy life surrounded by those that love him.

Ryan was just like any other 11 year old. He loved playing sport. He was very active. He had a cheeky smile and the most amazing blue eyes. In short he loved life. In June 2008, he started to feel unwell. Nothing that seemed major to us at that time. He got nauseous a few times in one week. It was like he had a bit of a stomach bug. I took him to the doctor but was told there was nothing to worry about. The second week this continued to happen. He didn’t get any worse, wasn’t sick every day, just randomly every couple of days. I took him back to the doctor and told the doctor that I thought we needed to see a specialist. My intuition was telling me that there was something more to this. The specialist sent him for tests and we were told that Ryan had a brain tumour. Our world was about to fall apart. We were told to pack our bags and that we were to be in Brisbane the next day to see more doctors.

In Brisbane other doctors and surgeons reviewed his scans to determine what could be done. But because Ryan’s tumour was in his brain stem it would be too dangerous to operate and the only treatment he could have was radiation. Our hearts were absolutely smashed apart that day when they informed us that Ryan only had months to live. I could not believe what they were telling me. How can a fit and healthy young boy only have months to live? Why wasn’t there any other treatment options for him? Radiation would only slow the growth of the tumour, not stop it. We spent 6 weeks on Brisbane while Ryan was given treatment. He was also put on other medication to try to help with some of the horrendous symptoms of the tumour. The side effects of the medication were also life altering for my poor son.

My son had an incredibly brave spirit. Throughout Ryan’s treatment and even when we got him home again he never complained, he never said ‘why me’. He had to get up every day and get dressed. He never wanted to believe he was sick. He was so very brave. He had his 12th birthday while he was sick. He loved a celebration. In the time we had him at home it was obvious he was getting sicker. I can’t go into the details as it breaks my heart all over again to even think about this, let alone share it. 12 days before Christmas my beautiful son passed away. He was robbed of his life by a disease that kills more children than any other disease.

My life has never been the same. This is a grief that you can never get over. We are not meant to bury our children. Time doesn’t heal all wounds. We have to find a cure for this monster.