More than two million Australians live with a rare disease, and on February 28, 2025, the Immune Deficiencies Foundation Australia (IDFA) called on communities to come together, spread awareness, and engage in conversations about rare diseases like immunodeficiencies.
Three-year-old Jack Baxter from Forbes, NSW, was diagnosed with Wiskott-Aldrich Syndrome, a rare immunodeficiency that left him vulnerable to infections and uncontrolled bleeding.
His mother, Emma, knew something was wrong when Jack suffered repeated illnesses, including pneumonia at seven months old.
Genetic testing at nine months confirmed his condition, leading to a life-saving bone marrow transplant in October 2022. His brave sister, Bethany, then nine, was his donor, giving Jack a second chance at life.
“Without the transplant, Jack’s life expectancy was just five to 12 years,” Emma said.
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Now, with 97 per cent donor marrow, Jack’s future is filled with hope.
Forbes Public School embraced Rare Disease Day by taking part in IDFA’s Colour a Zebra Competition, with an incredible 115 students submitting entries.
The competition not only encouraged creativity but also helped students learn about rare diseases and the challenges faced by those living with them.
School Principal Megan Staples highlighted the significance of the initiative.
"Rare Disease Day is an important opportunity to educate our students about the challenges many families in our community face," she said.
"Through the colouring competition, our students not only expressed their creativity but also gained a deeper understanding of rare diseases and the importance of inclusion and empathy."
On Friday, 14 March 14, IDFA CEO Carolyn Dews and Emma Baxter, mother of local young warrior Jack Baxter, will visit the school to present the winner with a family pass to the zoo and speak with students about rare diseases and the power of community support.
Rare Disease Day is a global movement dedicated to raising awareness for the over 6,000 known rare diseases, many of which are life-threatening and often invisible.
With 70 per cent of genetic rare diseases starting in childhood, IDFA CEO Carolyn Dews highlights the urgent need for greater awareness and support
“Jack’s story is a powerful reminder of why we must continue advocating for individuals with rare diseases,” Dews said.
“No one should feel alone on their journey, and together we can make a difference.”
With 72 per cent of rare diseases being genetic and nearly 1 in 5 cancers classified as rare, this day serves as a crucial opportunity to start conversations about the challenges of diagnosis, treatment, and daily life for those affected.
