Meet Áine a ‘warrior’ Changemaker from Waterford. As a person living with 22q11.2 deletion syndrome (22qDS), a genetic condition with a wide range of variable symptoms, Áine has faced numerous challenges. Despite this, she is a remarkable individual who refuses to let her condition define her. Her favourite quote is: “The warrior walks through the storm, but comes out stronger the other side”.

Áine's journey with her rare disease began when she was diagnosed at 15. This diagnosis explained many of the symptoms Áine had been experiencing and struggling with, particularly during her school years. Today, Áine is not just surviving, but thriving. She is a Special Olympian in 10-pin bowling and athletics, having represented Ireland in the Special Olympics World Games in 2003. She's a proud silver medallist and recently joined a basketball team.

Áine is also a member of the 22q Young Experts by Experience Panel (YEEP), where she has found a supportive community and has had the opportunity to connect with many people around the world with 22qDS. She believes in the power of sharing her story to raise awareness about her condition.


Her involvement in the I am Number 17 campaign is driven by her desire to shine a light on rare diseases and to emphasise that individuals with rare diseases are more than their diagnosis. Áine encourages other people living with rare diseases to keep going and to find the right support circle if they can. She describes herself on her journey with rare disease as “brilliant”, “warrior”, “funny”, “resilient”.

Photography by Julien Behal