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A Very Special
Thank You!
Local 2043
Marblehead, MA
Professional Firefighters
Marblehead, MA
Professional Police Officers
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Meet the Children - Karlyn Gilligan |
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Karlyn Gilligan
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Age 7
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 Karlyn
Gilligan, or Kiki as the world knows her, is an extremely spirited
seven year old, who is the living embodiment of never stop, never
quiet, never stop, never slow down, and never, ever stop! Kiki got her
name from her brother Jax who could not pronounce her first name, and
once anyone put Kiki with that personality, it stuck. Talk to anyone
from the Bell School and ask them if they know Kiki. They will tell you
that you are talking about one energetic force of nature.
Patrick
& Amy found out Kiki had Cystic Fibrosis (CF) when she tested
positive for the genetic disease shortly after her birth. It was a
rough few weeks for the Gilligans. Jackson had just received his
official Autism diagnosis, confirming a long period of watching him not
keep up with the growth & development of his peers. Then they
received a phone call from their pediatrician informing them of
Karlyn's genetic test, and all of this news came within a month. When
you talk with Amy or Patrick they will tell you about that phone call,
"We didn't know what CF was when they told us; we just knew it was the
name on the list of things you never wanted to hear associated with
your child..."
 CF
is a fatal genetic disorder that affects over 30,000 Americans. This
disease is marked by chronic infections, clogged airways, and digestive
and reproductive problems. In cystic fibrosis patients, problems occur
because the mucus in their lungs is very thick and sticky. Instead of
serving as a lubricant, it clogs the respiratory system and allows
bacteria to grow within it, impairing the body's natural defenses. The
thick mucus also obstructs the pancreas, preventing enzymes from
reaching the intestines to digest food. To contract the disease, a
child must inherit a defective copy of the CF gene from each parent.
One in 20 Americans - more than 12 million - is an unknowing,
symptom-less carrier of the disease. Each time two CF gene carriers
conceive a child, there is a 25-percent chance the child will be born
with the disease, a 50-percent chance that the child will be a carrier,
and a 25-percent chance that the child will be a non-carrier.
Although
cystic fibrosis is not yet curable, the good news is that the situation
is not hopeless. Each day since the cystic fibrosis gene was discovered
in 1989, the pace of CF research has greatly accelerated, and
scientists continue to find ways to help those who live with the
disease. These treatments include the use of tobramycin - a drug
therapy for CF approved by the Food and Drug Administration in 1997 -
and experimental gene therapy treatment.
The
prognosis is encouraging: in the 1960s, children struck by the disease
were not expected to reach their eighth birthday; today, most have an
average lifespan of 30 years. Other common symptoms of CF include
chronic cough and difficulty breathing, frequent sinus and respiratory
infections, nasal polyps, excessive production of mucus, recurrent
pneumonia, frequent foul smelling stools and diarrhea, enlarged
fingertips, and sterility in males.
The daily
rigors of living with cystic fibrosis are tough both on the children
afflicted with the disease and on their families. Fortunately, a
combination of therapy and pharmaceuticals can help keep the symptoms
under control and enhance the child's quality of life. The long-term
treatment process includes: enzymes that help in digestion; high doses
of antibiotics during bacterial infections; daily therapy sessions that
include special exercises to loosen and promote drainage of the mucus;
other types of exercise to strengthen breathing and cardiovascular
function; proper nutrition and vitamins; and several inhalation
treatments each day to cut through the mucus.
Kiki has been, to date, fairly healthy. She has been in for a few
"cleanouts". These are usually extended hospital stays that are marked
by intensive IV drug and physical therapy sessions. A few years ago,
she underwent a surgery to place a permanent port in her upper chest
that allows a visiting nurse & Mom to administer drugs at home. Dad
usually handles the "pat-pats" (PT), and then Kiki is outside with her
pals William & Gresh before you can say get back in this house.
Kiki is a self-admitted tomboy who will tell you she wants to go to the
University of Notre Dame when she gets older. She might, she is a good
student. She loves watching Notre Dame Football with Dad. Has a hard
time sleeping until she knows who won a Red Sox or Patriots game, and
she will ski anytime she is given the opportunity. Kiki loves her
friends, loves her bike, and keeping her inside on a nice day is like
caring for a caged lion. If you are picking something up at Gilbert &
Cole and you hear the bellowing of a fast moving little blond girl,
chances are you know Kiki too!
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