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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

Updated: 12/20/07 7:52 AM

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.

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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.”