Kylie's Story

Images Captured by Aspectus Photography

Tiny light Kylie is so good at making friends; she is greeted at school every morning with a row of classmates waiting to give her hugs.  This beautiful five-year-old girl has brought her parents so much joy, though the road has been challenging. 

Trevor and Michelle did not get a proper diagnosis for their daughter’s condition until she was almost a year old.  When doctors told them Kylie had Joubert syndrome, they were devastated.  It is a rare genetic disorder caused by the absence or underdevelopment of the cerebellar vermis, an area of the brain that controls balance and coordination.  Effects vary amongst children but include decreased muscle tone, jerky eye movements, difficulties with coordination and cognitive impairment.  “It was particularly hard because the doctors could not tell me if she would walk, talk or if there were cognitive delays.” 

Now Kylie is going to kindergarten and is doing very well.  She can take 22 steps in a row without falling!  She is also learning new verbal words.  This cheerful girl enjoys dancing to music, drawing, laughing and playing pretend games.  Her newest love is her brand new baby sister, Hailey, who was born in December. 

Most importantly, this Tiny Light has taught her family to have patience and never take things for granted.  “Although Kylie’s journey looks nothing like I thought it would, it is more rewarding and beautiful than I could have ever imagined.” 

Written by Elaine Yong