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The Buffalo News
Friday, December 21, 2007
FOCUS: MEDICAL SCREENING
Grand
Island family, touched by illness, urges newborn medical screening
In
the spirit of Hunter Kelly, two siblings symbolize why early detection is so
vital
By
Gene Warner NEWS STAFF REPORTER
Updated: 12/20/07 7:52 AM
Charles Lewis/Buffalo News
Emma Chorey and her big brother
Matthew were born with the same disease,
but his was not diagnosed for nine months.
Hers was found in nine days, so she went on
a special diet and has been developing well.
Hunter
Kelly — the inspiration for the Hunter’s Hope movement — has passed on, but
he has managed to pass the torch to others who have become symbols of the
need for newborn medical screening.
Kids such
as 11-year-old Matthew Chorey of Grand Island.
Matthew,
a kid with a big smile and lots of personality, loves mashed potatoes with
gravy, “Veggie Tales” cartoons and swimming.
But like
Hunter, who died in August 2005 at age 8, Matthew can’t walk or talk. And as
much as his family cherishes him, they know he could have had so much more
if he had been screened for his disease at birth.
Matthew
was born with glutaric acidemia, an inherited disease that left him without
two key enzymes that are used to break down protein. When the disorder is
untreated in infancy, the buildup of acids can cause irreversible damage to
the basal ganglia of the brain, which controls muscle movement.
That
didn’t stop Matthew from appearing in a nationally televised 30-second
commercial with Hunter’s father, former Bills quarterback Jim Kelly. The
commercial, which appeals for universal newborn screening, begins airing
today on the NFL Network.
“Every
Child, Every Time, Everywhere,” reads the tag line for the commercial.
Not every
child has been saved, though. The fight to universalize newborn medical
screening came too late to benefit Hunter — or Matthew.
But such
a test did help Matthew’s younger sister, Emma Chorey, who celebrated her
first birthday Dec. 9.
On a
recent morning in their Grand Island home, the contrasts between Matthew and
Emma couldn’t have been sharper.
Emma, the
1-year-old with the bright red hair, crawled all over the living room
carpet, pulling herself up to stand next to her big brother and clutching a
few DVDs along the way.
Meanwhile, Matthew, a full decade older, sat in a car seat, understanding
what everyone said but unable to talk or walk, and with little control over
his arms.
Both
children were born with the same disease, glutaric acidemia, but Emma’s was
discovered when she was about 9 days old, Matthew’s when he was about 9
months old. So she was treated immediately with a low-protein diet and
constant monitoring, and she’s doing well.
The
Choreys, like the Kellys, want to do anything they can to spread the word
about the need for universal newborn screening.
“To see
Matthew in his wheelchair, watching other kids play baseball, to know that
[his condition] was preventable by a single test at birth, we want to give
every child a chance — the way Emma has been given a chance,” said their
father, Michael Chorey.
‘Almost like brothers’
Chorey
and his wife, Kathy, see the obvious connection between their son and
Hunter, who was 5 months younger than Matthew.
“The two
of them are connected almost like brothers against these terrible diseases
against children,” Michael Chorey said. “They’re in this fight together.
“Maybe
Hunter passed the baton to Matthew. Maybe one day they’ll be together in
heaven, and they’ll see how God used them in this fight.”
Jacque
Waggoner, Hunter’s grandmother and the chief executive officer of the
Hunter’s Hope Foundation, agrees with Chorey.
“I do
believe that Matthew is one of the children carrying on the legacy and the
fight, without saying anything — just like Hunter,” she said.
During
his short life, Hunter Kelly, largely through the efforts of his celebrity
family, helped raise millions of dollars and a ton of awareness about his
disease and about the crucial need for universal newborn screening.
Even
after Hunter’s death, he and Matthew share some time in the ad running on
the NFL Network, which isn’t available in most Western New York households.
The ad
shows a touching photo of Jim Kelly with his son on the Ralph Wilson Stadium
field.
“Imagine
your child never realizing their dreams, disabled or dying just because your
state doesn’t screen your child for more diseases,” the narrator says.
“Universal newborn screening can change that. Every newborn, in every state,
tested for the same diseases.”
Then Jim
Kelly, dressed in his Bills jersey, says, “I’m Jim Kelly. I need your help.”
The
camera shows Kelly pushing a laughing Matthew in his wheelchair across the
Ralph Wilson Stadium turf. The narrator then asks people to visit the Web
site for Hunter’s Hope, at
www.huntershope.org, to learn more about
universal newborn screening. Ad going on Web site
The ad,
expected to be available today on that Web site, is geared toward the
general public, encouraging people to take action and lobby for such
widespread screening, Waggoner explained.
That push
is progressing on two fronts:
• Last
week, the U.S. Senate passed the Newborn Screening Saves Lives Act, which
provides federal money and information to the states to improve and expand
their medical screening of newborns.
That
legislation, co-sponsored by Sen. Hillary Rodham Clinton, D-N.Y., also would
establish the Hunter Kelly Research Program at the National Institutes of
Health to aid research in screening technology and treatments.
•
Individual states have a hodgepodge of screening requirements.
New York,
for example, screens newborns for 44 core diseases, plus Krabbe
leukodystrophy, the disease that Hunter Kelly had, Waggoner said.
A map on
the Web site for Hunter’s Hope shows that Minnesota tests for the most, 54
diseases. At the other end of the spectrum, 11 states test for fewer than 29
diseases. Pennsylvania, according to Waggoner, tests for only seven.
When
Matthew Chorey was born, in September 1996, New York did not test for
glutaric acidemia.
The
disease is so rare that when Matthew finally was diagnosed, he was believed
to be the only Western New Yorker with that disease. More than nine years
later, Emma was believed to be the second local child diagnosed with it.
At 9
months old, Matthew got the flu and suffered a metabolic crisis, going into
seizures and being rushed to Children’s Hospital. After doctors diagnosed
the problem, they gave the Choreys a simple message:
“What you
see is what he’s going to be for the rest of his life.”
The
Choreys are people of faith, and they’re still hoping for a miracle.
Michael, an ordained minister, serves as executive director of Joshua
Revolution, a Christian youth organization.
“No
matter what the doctors say, we firmly believe there is a chance that
Matthew could walk and talk and be normal,” his father said. “We don’t get
depressed over the disease, because we know it’s part of the Lord’s plan.”
Last
December, when Emma was born, her parents knew she had a 25 percent chance
of having glutaric acidemia. Just before Christmas, the tests came back
positive.
“It was
definitely a jolt,” Michael Chorey said. “We were broken. We just held each
other and cried.”
‘Danger time’ till age 6
Kathy and
Michael Chorey kept thinking of Matthew and wondering whether Emma would
face the same challenges. But she has progressed well, and they have been
told that Emma, on the proper low-protein diet, had a 60 to 70 percent
chance of developing well.
“From now
until she’s 6 years old is her danger time,” her father said. “So if she
turns 6 with no problems, [we were told to] treat her to the biggest
birthday party.”
For now,
the Choreys are extremely thankful. They have two healthy children, Andrew,
13, and Hannah, 6. Emma is thriving, and Matthew is reaching out to others,
in his own way.
“He
touches people with his huge smile,” Kathy Chorey said. “He’s got a special
personality.”
It’s
Matthew’s turn now to help spread the message.
“We feel
so blessed that God put the Chorey family into our lives,” said Waggoner,
Hunter’s grandmother. “That family says it all, about the importance of
newborn screening.”
gwarner@buffnews.com
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