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Jenna-Lee's Story

Thursday, January 31, 2013

Memories Captured by Scuffed Boots Photography

Tiny Light Jenna-Lee enjoys colouring, going for walks and watching Elmo. She especially loves hanging out with her brother Hunter and step sister Candace and going to the park to play.
Jenna-Lee was diagnosed with Costello syndrome just before her second birthday – a rare genetic disorder characterized by impaired cognitive functioning, dwarfism, heart problems and distinct facial features. Shortly after her birth, she had difficulties eating and was fed through a G-tube. She was also born with a barrel chest and with what doctors call “a boot-shaped heart” – where the muscles on the left side of the heart are too thick, do not pump enough blood and cause her to turn blue.
Jenna-Lee cannot walk or talk but perseveres by getting around on her knees. On her knees she runs, jumps and dances, keeping up with her siblings. This determination inspires Jenna-Lee’s family and they are in awe of her will to fight. “For a little girl we were told would never see her first birthday she is well on her way to five.”
Despite her medical challenges, Jenna-Lee is a happy child who loves to smile. Her family credits her diagnosis with bringing them closer together, providing support and comfort for one another. As a message to other Tiny Light families, Jenna-Lee’s parents say, “No matter what the doctors tell you never give up fighting or hope, these kids are truly amazing and can do anything.”
Story by Stephanie Bond


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