Thank you for visiting our fundraising page and supporting our campaign to raise money for The Royal Children’s Hospital Foundation to fund essential research to enable children living with ichthyosis.
This is an area that currently falls outside of government funding. No funding means that no work is being done to focus on this rare disease that affects the health and lives of children growing up with ichthyosis.
As a family, we know this situation well. When we were new parents to a beautiful baby with ichthyosis it took six weeks to get a general diagnosis. We left the physicians room with a determination to do the best we could by our new baby but we had no medical wisdom, or community to leverage - and both the research and technology for effective diagnosis and treatment lagged. It is our lived experiences as a family that has led us to ensure that the much important and needed research for this condition is on the agenda.
We whole heartily believe that for children living with ichthyosis their diagnosis, treatment and quality of life can be improved through your donation. We are grateful for your attention and urge you to support our plight.
At a minimum, please can we ask you to share this cause to anyone else in your network that would be interested.
From Perth, keep it up!. My son is under the umbrella also