“This inspiring and incredible girl works so hard every single day as do all the people who are by her side every minute of the day to help her through it. She loves to sing, chat, swim and above all do her best to crush her exercise goals…her favorite line is Exercise makes me happy!“
A message from Sophia’s family:
This amazing warrior has been relentless from the start. 17 years ago we had no idea about KAND and although this beautiful child was robbed of the ability to see, to move freely or to communicate, she was blessed with an amazing family, friends, therapists and a world who saw her potential. It has been a long and very challenging road to 17 years of age but she continues to move from strength to strength. She has found a voice to communicate, she has developed the strength to move and although she can’t use vision she has learned to navigate the world as much as she can with her other senses.
This inspiring and incredible girl works so hard every single day as do all the people who are by her side every minute of the day to help her through it. She loves to sing, chat, swim and above all do her best to crush her exercise goals…her favourite line is “exercise makes me happy”.
We now know she has defect in the KIF1a gene, ( diagnosed at 16years of age) , we are now beginning to understand the enemy and we are now doing everything we can to gather support and funding to beat this enemy and provide a longer and better life for our warrior and all the others that have this condition. Our goals are to continue to move from strength to strength with Sophia’s progress as well as to harness as much support and create as much awareness as possible about KAND. Together we are strong and we can break through the challenges of this malicious disease.
