Julia's Story

Images Captured By Rebecca Sehn Photography

Tiny Light Julia loves playing with her older sister Ashley. She also enjoys attending preschool and ending her busy days with a nice cuddle with dad!

A few weeks after Julia was born, she was diagnosed with Tetrasomy 15q Syndrome – a rare chromosome disorder where one is born with extra genetic material from chromosome 15. As a result, Julia was a very weak baby and it took her ten days before she could open her eyes. She was also subsequently diagnosed with scoliosis and underwent a total of 20 surgeries in just the first four years of her life. She will continue to require surgery every six months to monitor her scoliosis until she finishes growing.

This Tiny Light is an inspiration to her family with her unwavering determination and desire to overcome the challenges she faces. As her parents say, “She amazes us daily with her strength and character and brings so much joy to our family.”

Julia’s parents say the hardest part of their journey has been learning that her condition is not something that they can “fix”. As a message to other families in similar situations, Julia’s parents say, “Live life to the fullest, include your child in everything you can, follow their joy and take time for yourself.”

Story by Stephanie Bond