One Small Step at a Time
We have three pictures of Hayley Villano for you. The first is
Hayley at 6-years old in July 2008. She’s smiling her biggest,
widest smile for the camera, as all children of that age do.
Bigger and brighter than normal is always better!
Her mother Becky writes: “One minute we have a beautiful,
active, healthy six-year-old; the next minute she’s in a coma
and on life support. Devastation can only scratch the surface of
impact on our lives.”
Hayley’s family include Becky, her mother, Patrick, her father, and Isabel, her sister who reside in Lakewood, Colorado. While Lakewood is a suburb of Denver, it may seem that mileage is not an
issue. However, Hayley was in a coma for five months, three of those in Children’s Hospital and
two at home. Just think for a moment of a family at their child’s bedside as many hours of the
days as they possibly can be, and then you know that the miles across the greater Denver area
piled up mightily for the Villano’s.
The second picture of Hayley was taken in February of 2009,
one week after the initial trauma. Doctors discovered that Hayley
had contracted Influenza B (not the Influenza B for which you
can be vaccinated), and this became Acute Necrotizing
Encephalopathy which attacked her brain and brain stem. Becky
adds: “The doctors feel it’s a rare inherited factor (a specific
gene) that allowed the flu to attack the brain instead of where it
normally would.” At this point, Hayley was involved in a genetic
study to attempt to learn how this could happen.
The third picture of Hayley, November 2009, was taken at home.
After her three months in the hospital, she was dismissed to the
family home where her coma was monitored by home care
nursing staff 20 hours per week. She was in a coma for a total
of five months, and during that time, she lost gross and fine
motor skills, speech, ability to eat, almost everything that a
human body is supposed to do.
As crushing as this is, the Villano family knew that Hayley’s spirit
was waking up along with Hayley!
As Hayley began coming out of her coma, she began working
with several different therapists. She had her 20 hours of nursing care each week because she
still had a tracheostomy to breathe and had a feeding tube placed into her stomach. Any port in
her body could be a breeding ground for infection. She also had physical therapy three days a
week, occupational therapy two days a week, and speech therapy one day a week.
When the Villanos became a Gracie’s Promise family, we began hearing about the efforts to wean
Hayley off the trach. It is an exacting process of taking the patient off the ventilator for a few
minutes at a time at first, and then adding more time off the machine as the patient can tolerate.
If this could be accomplished, then Hayley could begin to travel outside her house without the
breathing machine. Her world would expand, and she could receive more stimulation, both
sensory and human stimulation, to “exercise” her brain.
Hayley was able to breathe on her own in July 2010. What a celebration for the Villano family and
all their friends and loved ones!
And while this remarkable child was concentrating on breathing, she was also figuring out how
she could communicate with her family.
One of the first adventures Hayley embarked on was a visit to her grandmother’s. The drive took
them up into the foothills of the Rockies, and Hayley was thrilled. They spent a few hours with her
grandmother, and then thought they needed to get Hayley home. She let them know, in no
uncertain terms, that she wasn’t ready! They were able to spend a little more time on this visit,
and the whole family felt the triumph and victory of a trip they might never have taken with Hayley
a few months before.
On the home page of our website, you see some of the Gracie’s Promise families. In the picture of
the Villanos, you see Hayley in the forefront in a beautiful, frilly dress. A few weeks later, we were
able to meet the whole family, along with Grandmother, at the “1st Annual Gracie’s Promise
Celebration of Life” held in Greeley, Colorado, and sponsored by Gracie Claborn’s family.
Hayley was resplendent that day in a Gracie’s Promise baseball cap, matching shorts and top, and
running shoes. Each family member took turns wheeling Hayley around the grounds of the
Celebration, and Hayley met many new, adoring fans and friends.
Gracie’s Promise selects families from applications, and then each family is assigned a sponsor
who reports to the Board on the progress and needs of the family on a quarterly basis. The Board
wants to stay with a family for the long haul and as long as they need the financial resources we
can provide. Our job is to keep earning the financial resources for them!
Becky tells us that the amount of money is important, but they find that the timing of the money is
the most amazing. One of their quarterly checks arrived just as Hayley was weaned off the trach,
and they no longer could have nursing care for the amount of time they had it before. Becky
needed to quit her part time job to be with her girls more, and that small check helped them
move into a new financial situation a little more smoothly.
It all happens just one small step at a time.