This End of Financial Year, as Maddie’s Vision celebrates 10 Years of Impact, we reflect on the powerful stories of courage, loss, hope, and resilience shared by the patients and families we support.
To mark this milestone, we’re highlighting four unique journeys that show the vast affect Bone Marrow Failure Syndromes can have at any age, and at any stage of life. These stories reflect not only the profound impact of these devastating conditions but also the strength of the community we’ve built.
We are excited to showcase some of the groundbreaking progress being made by our researchers, advancements that could not have been possible without the dedication and generosity of the Maddie's Vision community. These stories are a testament to how far Maddie’s Vision has come over the past decade - and a reminder of how much more still needs to be done.
This End of Financial Year, we're giving you the chance to DOUBLE YOUR IMPACT! We need your help to fund new research into Bone Marrow Failure Syndromes and provide patients and families with vital support services. We are so grateful to all the incredible patients and families who have bravely shared their story.
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. View Thomas's full story here.
In early 2022, 49-year-old Matthew Gibb was healthy, full of life, and excited as he prepared to start building his dream home. Then, after noticing red spots covering half his legs, he got a blood test which led to an emergency hospital stay. Days later, he was diagnosed with the Bone Marrow Failure Syndrome, Severe Aplastic Anaemia (SAA), one of the worst cases seen at the Royal Adelaide Hospital. View Matt's full story here.
Luci was in the prime of her life. At 28 years old, she had moved to Wales with her long-term partner to begin a new adventure. Nine months of fun and fresh experiences went by before Luci noticed herself feeling extremely weak. Trying to shake it off, Luci kept living her busy lifestyle until one morning she couldn’t even move from the bed to the bathroom. Luci raced to the emergency room and three weeks later was diagnosed with Severe Aplastic Anaemia. View Luci's full story here.
Brenda and her family had never heard of Fanconi anaemia until September 2018, four years after she lost her beloved daughter Jenaya to Myelodysplastic Syndrome at the age of 32. Jenaya left behind a young daughter who Brenda was now sharing the care of while processing her own grief. When she then received a call from her son Ryan to tell her he had mouth cancer, Brenda was overwhelmed with despair, “I remember thinking, ‘What have we done? What possibly could have caused such grave illnesses in both my children? What did our family do to deserve this?’” View Brenda's full story here.
