Personal Stories
Thanks to our incredible patients and families for sharing their stories. This is who we’re working for!
When you support Maddie’s Vision, you’re helping power the incredible research that will unlock better treatments and cures for people living with Bone Marrow Failure Syndromes and ensuring they can access the support they need. Thank you.
Flynn’s journey with Diamond-Blackfan anaemia
Like many parents, Dale and Karen remember the early days of Flynn’s life as a mix of excitement, adjustment and finding their feet with a newborn. Every new parent experiences ...
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Brenda’s courage in the face of unimaginable loss
“They say grief lasts as long as love – I will be grieving for both my children for the rest of my life.” – Brenda, Mother to Jenaya and Ryan Fanconi anaemia is a rare, ...
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Matt’s experience with Severe Aplastic Anaemia
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 ...
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Thomas’s Story: a family united in the fight against Aplastic Anaemia
June 2025 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 ...
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Olivia’s experience with Aplastic Anaemia
December 2024 Olivia is a 32-year-old doctor working in paediatrics at The Royal Children’s Hospital in Melbourne and lives with her partner Craig and their two dogs, Ted and Millie. ...
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Luci’s journey with Severe Aplastic Anaemia
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 ...
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Help change the future for children like Tae
Tae was sick since he was born. At nine years old, he was finally diagnosed with an inherited Bone Marrow Failure - Schwachman Diamond Syndrome. After losing his dad to gastric cancer ...
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Lily’s experience with Severe Aplastic Anaemia
At just three years old, Lily was diagnosed with Severe Aplastic Anaemia. What followed was a difficult experience for the family as they navigated Lily’s treatment and the trauma of so ...
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Joel’s experience with Aplastic Anaemia
Joel was only six years old when he was diagnosed with Severe Aplastic Anaemia. This was the start of a complex and often lonely journey for the family as they battled through Joel's ...
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Zahra’s Journey with Myelodysplastic Syndromes
Zahra's journey with Severe Aplastic Anaemia and Myelodysplastic Syndrome (MDS) lead to a bone marrow transplant which saved her life. Her mother Anna has kindly shared their story.
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DJ’s experience with Severe Aplastic Anaemia
For many patients with Bone Marrow Failure Syndromes, a bone marrow transplant is a hope for a cure. But this treatment comes with the risk of serious complications. Many patients ...
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Jack and Hannah’s story with Aplastic Anaemia
When Jack was diagnosed with Aplastic Anaemia, he and his fiancé Hannah had never heard of the condition and weren’t sure what to expect. Tragically, Jack passed away after ...
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