Dialog Box

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. Thank you.


Matty & Cheryll

Meet Matt and his grandmother Cheryll who he affectionately calls Honey.

Cheryll talks about Matty's journey with Fanconi Anaemia — an inherited Bone Marrow Failure Syndrome — and her hopes of a cure.

Carter & Skye

Carter and Skye's mum Karen shares her family's story — from searching for answers to her children's illness to diagnosis of Shwachman-Diamond Syndrome, an inherited Bone Marrow Failure Syndrome.

Evgenia's story: I needed a bone marrow transplant to save my life. Here's what helped me through...

Undergoing a bone marrow transplant can be a lonely experience. Here, Evgenia shares her story in the hope that it will help others going down this road.

Read more

Rob's story: My journey with Aplastic Anaemia

While Aplastic Anaemia commonly affects young people, the condition also peaks in patients over 60 years.

Thanks to Rob for sharing his experience with such honesty and good humour.

Read more

Zak

Hear how genetic testing was able to show the best treatment path for young Zak: a pre-emptive bone marrow transplant.

Recent advances in genomics testing are saving lives. Stories like Zak's highlight why Maddie's Vision is so focussed on funding medical research and clinical trials that will deliver answers to patients sooner.

Roxanne's story: Supporting my son through treatment

In 2011, a phone call changed everything. 

One of Roxanne's three adult sons was diagnosed with Severe Aplastic Anaemia. 

Read more

Kayla

Dairy farmer and business owner Kayla talks about her journey with Aplastic Anaemia — and why funding breakthrough research is so important for people with Bone Marrow Failure Syndromes. 

Nick

At 19 years of age, Nick was diagnosed with Aplastic Anaemia. 

After 5 gruelling years of treatment, Nick was matched for a bone marrow transplant.

Haematopoiesis, or Blood Poetry

Dr Jessica Lake is a writer and academic in history and law at the Australian Catholic University. She has published in books, academic journals and newspapers in Australia and the United States. She is also the mother of three children, and in 2018, her 3-year-old son was diagnosed with idiopathic Aplastic Anaemia. 

Jessica has authored an incredibly moving and eloquent journal article, weaving together the story of her son’s illness with the history of aplastic anaemia and the cultural significance of blood and bone marrow. Titled “Haematopoiesis, or Blood Poetry”, it has been published in the  journal of Perspectives in Biology and Medicine (John Hopkins University Press), and is available to access here.

Donate