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HOUSTON HOME JOURNAL
ANGEL
From page iA
danger, calm her down if
she is losing control, and
find her if she somehow slips
away and gets lost.
Why does Annabelle need
such a dog?
Well at first glance she’s
just another lively 10-year
old. Cute-looking, dressed
in the latest pre-teen style,
with big brown eyes and
wavy brown hair curling
around her face. We met her
at McDonald’s with her mom
and dad, Heather and Neil
Whitaker, her grandmother
Linda Whitaker and sisters
Megan, 7, and Aubrey, 1.
(Her other grandparents,
John and Kinnie Russell,
are also a big support, but
couldn’t be there.)
She never ate any burg
—~^^J
Contributed
Neil Whitaker, Annabelle’s
dad, works for the Coca
Cola plant in Macon.
Journal Charlotte Perkins
Annabelle Whitaker, left, asks her grandmother, Linda
Whitaker (holding Annabelle’s baby sister Aubrey), to
take her to the pet shop.
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Contributed
Megan Whitaker,
Annabelle’s 7-year-old sis
ter.
word at a time, sometimes
mispronounced or just short
ened to a single syllable. Or
she gets her needs and wish
es across with gestures.
She has a sleep disorder,
based on insufficient mela
tonin, that leads to her tak
ing impromptu short names
through the day, and but
staying wound up in the eve
ning.
Putting it simply, any child
can be a handful sometimes,
hyperactive sometimes. Any
child can pitch a tantrum
sometimes, act without
thinking of the consequences
sometimes, have a hard time
settling down sometimes.
But for Annabelle, all that
is the norm.
She’s got her strengths,
too. Underneath her some
times erratic and unpre
dictable behavior, there’s
a bright and loving child
who wants to be part of the
things. She is very affection
ate with those she loves, and
never forgets anyone she’s
met.
She loves “anything
Disney,” and anything to do
with University of Georgia
football. Also, while her
mother says she never cared
much about toys, she’s very
good with technical things,
like cell phones, and has
downloaded photos and
made long distance calls to
people she knows - not by
reading their names so much
as recognizing them as she
scrolls down the list.
Those familiar with
autism might think in a brief
encounter that Annabelle is
autistic, and there are some
similarities, but that’s not
the diagnosis.
This little girl was born
with a rare disorder called
Smith-Magenis syndrome.
She is missing Chromosome
Number 17, and her case is
one of fewer than 600 that
have been identified world
wide.
Smith-Magenis syndrome
leads to a variety of prob
lems, ranging from frequent
tantrums and difficulty pay
ing attention, to head bang
ing and repetitive behaviors.
Those who have the disor
der, frequently have hoarse
voices, as Annabelle does,
and some physical abnor
malities, which Annabelle
doesn’t have to any notice
able degree.
They feel little pain, which
is a problem because they
are inclined to pick at them
selves and not to notice cuts
or other small injuries.
The Whitakers, who live
on Lake Joy Road near Perry,
started out with their first
baby knowing that some
thing wasn’t quite right.
“The neonatologist at the
hospital thought that she
showed signs of being a pree
mie even though she was full
term,” Heather says.
And then there was the
problem of Annabelle’s fre
quent choking and turning
blue, which turned out to be
severe reflux which led to
her being placed in the hos
pital and taking three dif
ferent medications until she
was a year old.
She was a late walker, and
a frequent screamer.
“She would scream at the
top of her lungs if she had to
ride in a car, “ Heather says,
‘for either five minutes of
five hours. “
By the age of 2, she hadn’t
started talking at all, and
her worried parents just
got told that some children
develop later than others.
Finally though, she was
referred to the ‘Babies Can’t
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km.
Wait,” program and admit
ted to the special educa
tion pre-K program at Matt
Arthur Elementary School
at age 3. She still attends
Matt Arthur.
Her correct diagnosis
didn’t come until she was
5, and went, to the Marcus
Institute on Atlanta where
she was seen by a hoßt of spe
cialists, including a develop
mental pediatrician who had
just diagnosed another child
with the rare disorder and
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recognized the symptoms.
It took three weeks for the
chromosome test to come
back with a positive diag
nosis of Smith-Magenis syn
drome.
“It was very hard on Neil
and me,” Heather says, “you
never want anything to be
wrong with your children,
but then at the same time
we finally had someone actu
ally tell us what Annabelle
had. Once we knew what
was wrong we could find
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out what we needed to do to
help Annabelle. The speech
pathologist discovered that
Annabelle had a sub-mucus
cleft palate.”
That has been correct
ed by surgery at Scottish
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