Rare disease resilience inspires children's book

A LOCAL primary school student’s four-year journey following her diagnosis with Autosomal Dominant Hyper IgE Syndrome Stat3 Immunodeficiency is being retold in a new children’s book, What Does Brave Feel Like?

Six-year-old Ebony Derby started to experience health issues at just three months of age, including chronic ear, fungal and skin infections, as well as respiratory aspiration and eczema.

After multiple hospital admissions, she was diagnosed in March 2022 with the rare lifelong condition, which affects just one in a million people.

Her treatment includes daily antifungal and prophylactic antibiotics as well as regular immunoglobulin infusions, all of which have significantly improved her quality of life and allowed her to live with less pain and regularly attend school.

Immune Deficiencies Foundation Australia CEO Carolyn Dews said Ebony’s story is a powerful reminder of the importance of rare diseases advocacy. Photo: Supplied.

What Does Brave Feel Like? follows characters Ebony and Ismaeel for an honest look at what hospital days can be like for children receiving immunoglobulin infusions.

Along the way, they discover friendship, understanding and the quiet strength that comes from knowing they are not alone.

With 70 per cent of genetic rare diseases starting in childhood, Immune Deficiencies Foundation Australia (IDFA) CEO Carolyn Dews highlighted the urgent need for greater awareness and support.

“Ebony’s story is a powerful reminder of why we must continue advocating for individuals with rare diseases,” she said.

“No one should feel alone on their journey, and together we can make a difference.”

Ebony’s school, California Gully Primary, has also shown its support by working to raise awareness of rare diseases such as hers.

What Does Brave Feel Like? follows characters Ebony and Ismaeel for an honest look at what hospital days can be like for children receiving immunoglobulin infusions. Image: Supplied.

This has included taking part in IDFA’s Rare Disease Day colour a zebra competition in late February, with the winner receiving a family zoo pass.

School principal Andrew Frawley said the initiative was an important opportunity to educate students about the challenges many families in the community face.

“Through the colouring competition and fundraising, our students not only expressed their creativity but also gained a deeper understanding of rare diseases and the importance of inclusion and empathy,” he said.

“By sharing Ebony’s story, we aim to ensure she feels seen, supported and not alone.”

Visit the IDFA website for more information.