28/04/2026
This week, Jacob walked to kindergarten.
For most four-year-olds, that's an ordinary Tuesday morning. For Jacob, who was born with one of the most severe forms of Epidermolysis Bullosa (EB), it's something that wasn't possible before.
EB is a rare genetic condition that makes skin as fragile as a butterfly's wing. The children who live with it are called butterfly children, and for Jacob, daily life has meant constant blistering, hours of dressing changes, and wounds that have been open since birth.
At the The Royal Children's Hospital, Melbourne Jacob became the first child in Australia to receive B-VEC, a topical gene therapy that's helping those wounds finally heal.
This moment took decades of science and more than three years of advocacy to bring the therapy into the country. It happened because of an extraordinary partnership, the clinical team at RCH led by Dr. Tom Connell, the global EB research community we've been part of building for over a decade, and an outpouring of donors who refused to wait.
To Jacob, his family, the RCH team, and every person who made this possible, thank you. This is what years of work look like.
And it's only the beginning. Every child in Australia who needs this treatment should be able to access it. We won't stop until that's true.
🦋 Made possible with Royal Children's, EB Research Partnership Australia / EB Research Partnership, Cure EB Foundation, and a community of generous donors changing what's possible for butterfly children.
https://www.heraldsun.com.au/health/family-health/advocates-push-for-lifechanging-gene-therapy-after-boys-breakthrough-treatment/news-story/974ab9c55eb35efae765a81514c78f3b
