Meet Youth Advisory Group member Grace

Image of a young adult girl smiling at the camera as she takes a selfie outdoors. There is grass and trees in the background.

The Youth Advisory Group (YAG) is a new initiative that provides very special siblings between the ages of 14 to 25 a platform to be heard. The group is made up of nine enthusiastic, motivated, and inspiring young adult and adolescent siblings eager to express their thoughts and ideas in bold, creative ways.   

In this series, our Youth Advisory Group members have interviewed each other to learn a bit more about their day-to-day life experiences and time with Very Special Kids.  

Could you give me your name, age, and current level of education?
Grace Hall, 16 years old, year 10 student.

What is a fun fact about yourself?
I really like music and theatre.

If you feel safe doing so, could you share a bit about your sibling and their story?
My sister’s name is Charlotte, and she is 12. She has Leukoencephalopathy, the short name is Labrune syndrome. It causes cerebral calcifications, and cysts (LCC). At any one given time there are about 50 people in the world diagnosed with it.

What are you enjoying most so far about belonging to the YAG?
So far, my favourite thing about being a part of YAG has been being a part of a group of people with similar experiences to me and having a say in some of the aspects of Very Special Kids.
I joined Very Special Kids during COVID-19 and haven’t been able to participate in many activities they offer. So being a part of this group allowed me to meet people with similar experiences to me and have a say in things that affect others like me. I have always wanted to help others.