My name is Ali Haydar. I am a 36-year-old Australian, a proud husband and father, searching for answers and hoping to beat chordoma rather than become one of the many people who have lost their lives to this disease over the years.
Research is incredibly important to me because it represents hope—not only for myself, but for every person and family affected by chordoma. Since my diagnosis in January 2023, I have undergone multiple surgeries following four recurrences. Despite everything I have been through, there is still no clear treatment pathway that offers long-term certainty for people living with chordoma.
Research has the potential to improve earlier detection, develop more effective treatments, reduce recurrence rates, and ultimately give patients a better quality of life and a longer future. It represents the possibility of spending more time with our loved ones, watching our children grow up, and living without the constant fear of what the next scan may reveal. Every step forward in research brings hope that future patients will have better outcomes than those of us facing this disease today.
I want decision-makers to understand that chordoma affects every aspect of a person's life. It is not just a diagnosis. Before my illness, I spent more than ten years working in the construction industry and played semi-professional football for around eight years. My physical strength and ability to work were a huge part of my identity and how I provided for my family. Chordoma took that away from me.
The hardest part has been the impact on my family. During the most important early years of my two young children's lives, while they were both under the age of three, much of my time and energy was consumed by surgeries, recovery, medical appointments, and the uncertainty that comes with repeated recurrences. Instead of simply being present as a father and husband, I have had to focus on surviving while putting on a brave face for my children. Life with chordoma has become a hidden reality for them because I want to protect them from the trauma of what I am facing.
Living with chordoma also means living with constant uncertainty. Every recurrence brings the possibility of more surgery, more recovery, and more disruption to family life. The emotional, physical, and financial burden is something that patients and their loved ones carry every day.
I hope decision-makers recognise that investing in chordoma research is an investment in families, in quality of life, and in giving people living with chordoma a genuine chance at a longer and healthier future.
I take this journey one day at a time and continue to pray that circumstances will change for the better. From the bottom of my heart, I hope that every person fighting chordoma receives the good news they are hoping and praying for.