Maci's Story

Images Captured By Julie C Butler Photography
www.juliecbutlerphotography.com

With a smile that lights up a room, Tiny Light Maci has the ability to make everybody smile and laugh with her. Her favourite toys are her swing and Bumbo chair and she is especially drawn to lights and sounds.

At one month of age, Maci was diagnosed with Phelan-McDermid syndrome – a condition characterized by intellectual disabilities, sleep disorders and seizures. It is extremely rare with only 600 cases documented worldwide, making it difficult to gather consistent information. Most children diagnosed with Phelan-McDermid syndrome experience moderate to severe delays in speech, muscle tone and motor control and often have problems with eating. Many are not able to crawl until the age of three and are not able to walk until the age of five.

Maci is now ten months old and is fed through a G-tube. Her future remains uncertain but she inspires her family daily with her will to fight and her infectious laughter. As a message to other families in similar situations, Maci’s mom says, “Take it one day at a time, don’t rush for the future, live in the moment and enjoy it. Do the most to benefit your child, but with time, the milestones will be met and things will get easier!”

Story by Stephanie Bond