By Diana Whittle
Central to Haley DeLucia’s young
life is her treatment—a seemingly
never-ending process to battle
the cystic fibrosis that is relentless in
its attack on her body.
But at 13 years old, it’s all she has
ever known.
Diagnosed as an infant with the
life-threatening genetic disorder that
most critically affects the lungs and
digestive system, Haley’s medical
care costs an average of $15,000 a
month and involves a team of medical
specialists—as well as, within the last
year, three stays in Phoenix Children’s
Hospital.
Still, Haley aspires to maintain a
regular schedule and attendance at her
junior high. She dutifully gets up extra
early, before getting ready for school,
to start the treatment process herself.
This involves wearing a vibrating
vest to help clear the fluid in her
lungs, taking pills and receiving
extra nourishment through an IV to
supplement her nutrition.
In addition to the cystic fibrosis—
referred to commonly as CF—Haley is
diabetic.
CF is an incurable disease
affecting about 30,000 children and
adults, with nearly 75 percent of them
diagnosed by the age of two. It can
quickly wear down internal organs,
such as the lungs, liver and digestive
system.
Orchestrating Haley’s care
is stepmom Brandi DeLucia, who
also works 30 hours a week as a
receptionist at the administrative
offices of the Kyrene School District in
Tempe.
While her life with Haley is
both challenging and rewarding,
its progression was completely
unexpected.
Brandi was married to Haley’s
father, Jim. Their household included
Brandi’s two sons from her first
marriage; then, Haley came to live
permanently with them at age eight.
For a time, life for the blended
family was good. Brandi felt Jim was
“the love of her life” and he directed
much of Haley’s care.
“As a family, we went on a cruise,
and the salt water was great for Haley
and beneficial to her lungs,” recalls
Brandi of the happy memory.
Sadly, Jim died not quite two
years ago, leaving Brandi in what
she calls “legal limbo,” with no real
standing as Haley’s parent.
Since that time, she’s gained
custodial rights, but continues to
struggle to find her way as a new
widow with a stepdaughter who needs
a great deal of medical care, in addition
to her responsibilities for her two sons.
The household endured another
blow when they lost their home
recently and had to move.
“Some days it’s overwhelming.
The hardest part of becoming a widow
is that there is no script for the role.
You are thrust into a new way of life
overnight and you have to adjust as
best as you can,” said Brandi.
“For me, the simple process
of getting up each day and taking a
shower and dressing was the first step
to moving forward. I knew I had three
children to care for and I couldn’t stay
in bed all day.”
One of the positives, says Brandi,
is Haley’s generous spirit.
When given an opportunity
to be helped by the Make-A-Wish
Foundation, she chose a trip that could
include her stepbrothers. “We were all
able to go swim with the dolphins and
stay at a resort,” said Brandi. “It was a
wonderful trip.”
As a true survivor, Brandi credits
her religious faith, her family and
friends for being a vital support system
and a key component in her ability to
forge ahead. The support brings her
strength, and Haley’s determination
brings her hope for the future.
“Everyone who meets her falls in
love with her,” Brandi says. “She lives
in constant pain, but she still manages
to light up every room she enters.”
In addition to brightening a
difficult situation, Haley’s reaction to
her condition sends a message to those
around her.
It’s the same message Brandi
relies on in her daily life, a philosophy
she tries to keep in the forefront with
the whole family.
“I tell the kids, we all must rise
above everything that has happened
and to not let the tragedies define who
we are.”
Photo by Billy Hardiman
