Lucy seemed perfectly healthy at birth.
Nobody suspected that anything was wrong
until 24-36 hours after she was born.
"OF THE LIGHT"
Lucy Jane
was sent home
from the NICU on hospice...
Steve before he found out about Lucy's medical complications
Lucy in the NICU
with prayer flags beside her
But later, had a hospice graduation party when she was 10 months old, plus three separate first birthday parties to celebrate the monumental occasion.
In 2016, her parents were told that her life expectancy was 3-5 years.
...then had a
hospice graduation party
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Lucy is now nine years old and a daily reflection of pure goodness and trust. This family knows that they must be as brave as she is. They choose to believe in miracles and breakthroughs, both in the medical field and their lives.
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Lucy is the light of her family.
​
The reward is rich when you take the time to listen to someone who is nonverbal.
Navigating a medically complex child can be a frightening path, but Lucy continues to exude strength and a calm joy. Sensory processing challenges often cause Lucy to look away and become very quiet in an exciting environment or around new people. Because of this, few have a chance to see the giggly, bright-eyed, fierce girl that lights up her parents at home. This film is the first time others can see Lucy through their eyes.
And from their view, she is perfect.
 Sean films Lucy at school with preschool teacher Ms. Roz. |  The smile that heals. |
|---|---|
 With dad Stephen shortly after birth, before they knew anything was wrong. |  An EEG (Electroencephalogram) detects abnormalities and electrical activity in brain waves. |
 Lucy shows off her ever-improving hand dexterity while inspecting her little unicorn friend. |  Lucy wore sunglasses at the eye doctor after having her pupils dilated, so Dad did too. |
 Lucy's home 'med station'. |  Lucy rides Chili, a horse at preschool (recently graduated). |
 Lucy even makes Chili smile. |  Lucy in her stander, working on her weight bearing capabilities. |
 The family: Grace, Stephen, and Lucy in 2021. Photo by Ashley Robison. |  Hanging with mom in San Diego. |
 Mom tucks Lucy in bed. |  Stretching her wings. |