Ethan and Addelyn
Ethan is a kind-hearted and super active 9-year-old and his little sister, Addelyn, is a very determined selfless 4 year old. They are both so resilient and so brave.
"Being their mum is a privilege. It is a gift to love them, carry and guide them through each day”
This set of super siblings were both diagnosed at birth with Capillary Malformation (CM) and Arteriovenous Malformation (AVM) which are caused by a mutation of the RASA-1 gene.
This genetic mutation impacts the vascular system, causing blood vessels to form improperly.
Since day one, this diagnosis has been a constant battle for Ethan and Addelyn. After nine long years, their mum, Kylie, is continuously seeking clarity and guidance from medical professionals.
“The journey of living with children impacted by genetic disease is somewhat unknown, but there is hope through research at Children’s Medical Research Institute to gain clearer knowledge of what my kids have to live with and hope for every other family hoping to find a cure for their own kids.”
Both Ethan and Addelyn have endured endless doctors’ appointments, tests, and scans, all for the purpose of seeking answers to help manage their genetic disease.
In order to help speed things along and bring the world a step closer to finding treatments and cures for children’s genetic diseases, their mum, Kylie, is an unstoppable supporter of Jeans for Genes, taking on runs (from 5km to half-marathons) alongside her friends and fundraising for Children’s Medical Research Institute (CMRI).
“I’ve run City2Surf twice and a half marathon to raise awareness for vital medical research. CMRI is important to kids like mine and other families impacted by genetic disease. There needs to be more awareness of what Children’s Medical Research Institute does.
“I will run for my kids. I will carry my kids and advocate for my kids. I will fight for my kids, and I won't ever give up, no matter how hard it gets.”