Thomas’s Story: a family united in the fight against Aplastic Anaemia

Jo and Chris, proud parents to Amy, 12, Thomas, 11, and Kathryn, 10, live in the welcoming community of Warrnambool. Over two years ago, Thomas experienced concerning symptoms, becoming pale and extremely fatigued at school. After an urgent hospital visit, he was initially diagnosed with leukaemia and stabilised with blood and platelet transfusions before being flown to the Royal Children’s Hospital in Melbourne. Further testing revealed Thomas had a Bone Marrow Failure Syndrome called Aplastic Anaemia and would require a Bone Marrow Transplant.

The family immediately underwent testing to find a suitable donor. After months of treatment and weekly hospital visits, they received the news that Thomas’s sister, Amy, was a match. One day before the AFL Grand Final, Thomas commenced chemotherapy and Amy then donated her bone marrow for his transplant, a deeply emotional experience for the entire family.

Jo found support through the Maddie’s Vision’s Tele-Support Nurse, who provided medical guidance and emotional care. “It made a difference to know someone cared about all of us, not just Thomas. As a nurse she understands the ins and outs of the hospital. She helped me understand what was being done and why.” Jo said.

Thomas is now home and has returned to school. The family is incredibly grateful for the unwavering support from their community and local organisations. Jo’s advice to others facing a similar path is simple: “Take it one day at a time.”

For children like Thomas, a Bone Marrow Transplant is often their only hope of a cure. In 2024, Maddie’s Vision-funded researchers Associate Professor Elizabeth Ng, Professor Andrew Elefanty, Professor Ed Stanley and their team at the Murdoch Children’s Research Institute achieved a world-first breakthrough by creating lab-grown blood stem cells that closely mimic natural ones. This could lead to personalised treatments and provide new options for children who are unable to find a donor.

Associate Professor Ng explains the significance of these breakthrough results, “This brings us closer to the possibility of delivering perfectly matched treatments for patients in need of a bone marrow transplant, giving them the chance to make a faster recovery, experience fewer side effects, and enjoy a better quality of life.”