Destiny's Story

Memories captured by Melissa DePape Photography

www.melissadepape.com

Tiny Light Destiny has faced a lot of challenges in her ten years, but always keeps a smile on her face. She enjoys playing in water, swimming, scribbling, and watching hockey and baseball. She has a warped sense of humor and laughs when she hears someone say, “Ouch!”, “Uh oh!” or “Oops!” Even though she has limited hand use, she has learned to throw a ball and will happily play catch for hours.

When Destiny was born, she was diagnosed with cerebral palsy. However, just before her third birthday, she received a secondary diagnosis of Rett syndrome, a progressive neurological disorder that affects primarily females. Most girls begin to develop normally, but slowly lose their ability to speak, walk, and use their hands. Destiny was also diagnosed with a seizure disorder (which is uncontrolled), microcephaly (a small head), von Willebrand disease(a bleeding disorder), and scoliosis. In the past year, she has also undergone two major surgeries on her hips and back. Destiny is fully dependent in all aspects of daily living but despite her inability to speak, she does understand a lot.

Destiny has shown incredible strength over the years and her family is inspired by her resilience. With a progressive disorder, it is unknown which skills and abilities will be lost and which will be maintained. However, with the support of her two brothers and her parents, Destiny’s mother has learned to take things day by day and focuses on keeping her daughter happy.

Story by Emily Harrison