Here's Ethan and Addelyn
Ethan and his little sister, Addelyn, are best friends. They enjoy hanging out and doing all sorts of activities together, especially when it involves playing outside!
Both Ethan and Addelyn were born with Capillary Malformation (CM) and Arteriovenous Malformation (AVM), which are caused by a mutation of the RASA-1 gene.
It makes day-to-day living harder for them, and it means lots of tests, scans and doctors’ appointments.
By doing 60km in March, you’re helping Ethan and Addelyn find the answer to curing their rare disease. Their mum, Kylie, is so thankful for the difference you’ll make:
“The journey of living for children impacted by genetic disease is somewhat unknown but there is hope through research at Children’s Medical Research Institute to gaining a clearer knowledge of what can be done to better help my kids and every other family hoping to find a cure for their own kids.”