Tiny Light Kylie

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 us if she would walk, talk or if there were cognitive delays” her parents said.

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. Her parents went on to say, “although Kylie’s journey looks nothing like we thought it would, it is more rewarding and beautiful than we could have ever imagined.”

www.thetinylight.com

Joubert Syndrome

For more information go to

https://www.ninds.nih.gov/Disorders/All-Disorders/Joubert-Syndrome-Information-Page

Story written by Elaine Yong

Photos by Aspectus Photo

Read More Stories From The Tiny Light Foundation

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This post originally appeared on our September/October 2012 Magazine