Julia's Story
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Images Captured By Rebecca Sehn Photography
www.rebeccasehn.com
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