Ashley is a student in Year 3 at St Johns. Her family wanted to share her story with the school community.

An opportunity has come up for Ashley to participate in a US based global study to better understand her disability, and help her and a wider range of patients worldwide.

Ashley was four years old before newly developed genetic testing discovered she has a rarely seen genetic mutation. Not much is known about this condition. It is not passed on through genetic genes, but manifested by itself. It has recently been named Beck-Fahrner Syndrome. Ashley’s participation in this study will not only help her family long term but others who are diagnosed in the future. Some of the testing can only be done at the James Hopkins University in Baltimore in the US.

It will cost an a lot for Ashley's family to participate in this greatly important research and her participation can assist many more children and families in the future. If anyone in our community could assist, even in the smallest of ways, with funding this opportunity Ashley's family would be very appreciative.

Below is the link to Ashley’s Go Fund Me page.