January 17, 2013 PDF Edition - Wilbraham-Hampden Times

January 17, 013 The Wilbraham-Hampden TIMES
Page 1
Benefit scheduled ‘For the Love of Celia’
9-year-old Celia has
incurable tumor disease
By Nancy Piccin
Special to the Times
WILBRAHAM - For many years,
Anita and Larry LaBarbera of Wilbraham
organized fundraising events to benefit
the Children’s Tumor Foundation, a cause
close to their hearts because their daughter
Celia, who just turned 9, suffers from
Neurofibramatosis (NF2), a rare, incurable
disease that causes tumors to grow
throughout the body along the central
nervous system.
But as Celia’s medical issues have
demanded more of their time and energy
that activity had to be set aside. So this
year, a committee of the family’s friends
has shouldered the task. The dinner-dance
event, “For the Love of Celia,” will be
held in St. Cecilia’s Parish Center on Saturday,
Feb. 2 at 6:30 p.m. and will be a
fun event, with a DJ, cash bar, silent auction,
“candy bar,” balloons, cake pops and
other festive elements.
“Anita and Larry have worked tirelessly
for years to raise funds for the
Children’s Tumor Foundation. We were
thinking, as their friends, what could
we do? We decided to have a fundraiser
and to have the proceeds go to both the
foundation and the family, to help with
un-covered medical bills,” committee
member Brenda Willard said. “They are
always doing for others; I think it’s lovely
that their friends can help them too. That’s
what a small community is all about.”
Doctors Were Shocked
Celia began showing symptoms of
the disease at a mere four weeks of age,
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when a CT scan showed an abnormality in
her skull, and at 8 months old she underwent
an 8-hour, life-threatening surgery
to prevent the abnormality from crushing
her eye socket and blocking her nasal passages.
More tumors grew and were removed,
but because the disease usually appears in
young adults, NF2 was not diagnosed until
she was 2 years old. Her team of doctors
was shocked at the diagnosis because
they had never seen a child as young as
Celia diagnosed with NF2.Pain is the predominant
symptom of the disease, which
develops as tumors grow and compress
nerves or adjacent tissues. There is no
medical treatment for NF2 and there is no
cure. Surgical removal of the tumors or ra-
TIMES photo submitted
“For the Love of Celia,” to benefit Celia LaBarbera, will be held in St. Cecilia’s
Parish Center on Saturday, Feb. 2 at 6:30 p.m.
diation therapy to shrink the tumors to relieve
the symptoms is the only treatment.
Research on the topic states that “most
individuals with NF2 require at least one
operation during their lifetime”….Celia
has had 18 surgeries so far.
Recent Surgeries
Since her diagnosis her visits to Children’s
Hospital Boston and Mass General
Hospital continue on a regular basis once
or twice a week. Her most recent surgery
was last month: removal of a spinal tumor
that left unchecked would have paralyzed
her from the waist down.
Despite her illness, Celia is a joyful
little girl who loves school, plays the violin,
practices archery in her back yard and
loves arts and crafts and painting. “She’s
very intelligent, which is a godsend because
she’s missed so much school. Her
lifelong dream has been to have gymnastics
lessons, but the doctors always said
no because of the tumors,” Anita said last
week. “But this last surgery removed the
most dangerous tumor, “So they reluctantly
said she could have lessons.”
Anita said she is overwhelmed by
the effort going into the fundraiser. “It’s a
very isolating disease because there aren’t
a lot of people with it. To have somebody
recognize this need is so amazing,” Anita
said. “I really can’t believe it, and it will
make Celia feel so special. That’s really
good for her.”
Tickets for the event are $35 per person
and are available in advance only; no
tickets will be sold at the door. To buy
tickets or for more information, contact
Karin Tranghese at 413-530-6636 or ciggaroom@charter.net;
or Brenda Willard
at 413-279-1513 or brendaswillard@aol.
com.
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TIMES photo submitted
A “Candy Bar” will be set up at the
fundraiser for people with a sweet
tooth.