Rick Dean
Registered
6
http://www.ajc.com/metro/content/metro/0404/25edgar.html
Boy's illness draws desperate family to U.S.
What they did broke the law, but it's kept their son alive
By MARK BIXLER
The Atlanta Journal-Constitution
Published on: 04/24/04
Edgar Gutierrez gets out of bed before sunrise, walks downstairs and eats a bowl of cornflakes.
The 12-year-old rubs his eyes and stares out a living room window. Five minutes pass. He walks to the staircase and calls up in Spanish.
"Vamonos, Papa," he says. "Ya son las cinco y media."
Let's go, Dad
It's already 5:30.
A few minutes later, Edgar lies in the back seat of a Ford Aerostar and tries to sleep as his dad drives. The van turns by a blue road sign with the white letter "H,"
; a
d Edgar, whose kidneys have failed, ends up in a bed in the dialysis and transplant ward on the sixt
h floor of Children's Healthcare of Atlanta at Egleston.
The boy's father, Fidelmar, says he could not pay for Edgar's treatments on the $4,000 a year he earned as a carpenter in Mexico.
So he paid a smuggler to lead him across the border between Mexico and the United States, in violation of U.S. immigration law. Fidelmar planned to find work and send money to pay for Edgar's treatment in Mexico.
When the boy got sicker, Fidelmar paid a smuggler to bring his son to Atlanta, too. He found the treatments his son needed. He did not find an end to his son's problems.
The dialysis that Edgar receives free from the hospital normally costs $1,84
5 a week.
Hospital administrators say Georgia's growing illegal immigrant population is one reason the cost of treating uninsured patients is going up. The bigger reason, they say,
is
the
rise in the
number of U.S. citizens without health insurance, but a few hospitals near the Mexican border nearly have closed because
of the cost of treating large numbers of illegal immigrants.
In Mexico, Edgar's father watched for years as men left for the United States. Most left because some businesses on El Otro Lado --the Other Side --pay 10 times what a man can earn in Mexico, sometimes more.
The men knew that as long as an immigrant made it past the Border Patrol, he could live and work in the United States with little fear of detection. It was easy to buy fake documents that opened the door to work.
Companies on the Other Side did not seem to care whether workers were in the country with permission. Authorities hardly ever enforced laws against knowingly hiring an illega
l immigrant.
Yet Edgar's father never wanted to leave Mexico.
He says he preferred a simple country life in the state of MichoacÃԚ Ô�šÃ”š¡n, in central Mexico. He enjoyed livi
ng clos
e to hi
s parents and in-la
ws. It pleased him to see his children and their cousins ride bikes up and down dirt hills around their home. He says
he wanted to stay in those mountains forever.
Then Edgar got sick.
A border crossing
Fidelmar says he did what any father would do if his son's life was at stake.
He had to make more money to pay for Edgar's treatment. He headed north because a friend told him there were jobs to be found in Atlanta. He arrived on a Monday morning three years ago and found work within two weeks, driving a delivery truck from one Chinese restaurant to another. He sent a chunk of his earnings home to support his family and pay the doctors who treated Edgar.
He decided to bring his son to the United States when he had been in Atlanta for seven months, aft
er his wife called to say their son kept getting up in the night to use the bathroom, always seemed to have a fever, and fainted sometimes.
Fidelmar believed his son
would rece
ive better
medical care in the United
States.
One day he called his wife to say that a bus in a nearby town was leaving in two hours on the first leg of a journey to
Atlanta.
Fidelmar wanted Edgar on that bus.
Edgar remembers running in his sandals for an hour with his mother, brother and sister. Edgar's mother sobbed as they all climbed aboard the bus and rode north for about 30 hours.
After a night in a hotel just south of the U.S. border, they joined a group of more than two dozen people on the verge of crossing. They walked across the border --they're not sure where --and continued north for most of the day, Edgar says, through the stifling heat of a desert.
At night, after a guide served tuna mixed with eggs, Edgar walked away from the group to relieve himself. A Border Patrol sp
otlight pierced the darkness. Edgar dropped, covered himself with tree limbs, and lay still until the light went away.
He and the others in his group esca
ped detection.<
br>
The nex
t day, he and the others climbed i
nto two vans stopped by the side of the road. Someone had taken out the seats and people piled in the back, one on top of another.
E
dgar felt sorry for the people on the bottom. He imagined it was hard for them to breathe.
The vans went to a house in Phoenix, where people showered and ate. The people whom Edgar's family paid for passage drove them to Los Angeles. From there the family flew to Atlanta.
Hospitals cover costs
Edgar's mother took him to the hospital after they got to Atlanta.
The boy's kidneys were failing.
Federal law requires hospitals to treat patients with life-threatening illnesses, no matter their immigration status or ability to pay. The doctors who evaluated Edgar kept him in the hospital for two weeks.
B
y this time Fidelmar was earning $350 a week, more than he did in Mexico but not enough to pay for a two-week hospital stay or dialysis. The hos
pital charges rough
ly $615 for e
ach of Edgar's three-hour dialysis ses
sions. It covers the cost from its charity care fund, drawn from private donations and earnings from the hospital's operation.
Georgia hospitals report s
pending nearly $1 billion a year to treat poor patients without insurance.
The state makes it a condition of getting a hospital license: Every institution agrees to spend at least 3 percent of its gross revenue treating patients who cannot pay. In return the state provides hospitals with tax money to cover some costs of treating the uninsured.
Hospitals in Georgia spent $819 million of their own money to treat poor patients last year, and were reimbursed with at least $192 million in mostly public money. Those figures were up from $581 million and $157 million, respectively, in 1999
.
Experts cite several reasons.
More expensive prescription drugs increase the cost of treating all patients. More people l
ack health insurance. S
ome people in managed-
care plans are frustrated by attempts to see a doc
tor. They go to the emergency room, the most expensive place for routine care. Their insurance plans do not cover the visits, and sometimes the patients don't pa
y.
The growing number of illegal immigrants is also a reason, but it's hard to quantify because hospitals don't ask patients their immigration status.
"It is really not something we've been able to measure, but we do know anecdotally that, absolutely, there are a lot of costs being absorbed by the system, by hospitals treating illegal immigrants," says Kevin Bloye, spokesman for the Georgia Hospital Association. "I wouldn't say that it's the dominant factor in rising health care costs. It's one of many factors."
In 2002, 37 of 43 hospitals respondin
g to a survey from the National Association of Counties reported an increase in uncompensated health care costs. Sixty-seven
percent of respondents cite
d immigrants as a reason.<
br>
Another study in 2002 estimated that hospitals near
the U.S.-Mexican border spent $190 million a year treating illegal immigrants, about 25 percent of their total cost for uncompensated care.
In November, as an amendment to the Medicare pr
escription drug bill, Congress set aside $1 billion to help hospitals that treat large numbers of illegal immigrants. Hospitals in every state are eligible for money, but the funding formula favors hospitals in border states, such as Arizona, California and Texas.
The General Accounting Office, the research arm of Congress, is preparing its first report estimating the financial effect illegal immigrants have on hospitals around the United States.
Matter of life and death
Edgar needs a transplant, but no one knows whether he will get it.
Mont
hs after his mother first took Edgar to the hospital, his condition worsened. During one hospital visit, physicia
ns summoned Dr. Barry Warshaw,
an expert in treating children
with kidney problems.
Warshaw says he evaluated Edgar as h
e does any other patient, weighing his medical condition --not whether he had insurance --before ordering dialysis. He detected kidney scarring --doctors could not determine the cause --t
hat he blamed for the boy's illness.
"It's a life-or-death condition," Warshaw says.
The doctor ordered dialysis for Edgar, and the hospital began providing it.
"Within a short period, it would have been fatal without dialysis," he says.
Warshaw says he wants to transplant a kidney into Edgar, but administrators have a say in that decision. A team of doctors and administrators at Edgar's hospital recommends whether patients get on an organ transplant waiting list, the first step toward a transplant. The team has not put Edgar o
n the list. It wants to know how the family will pay for a transplant.
Doctors say that without
a transplant, Edgar will continue
to need dialysis. He can receive
dialysis indefinitely, they say, but the hospital is approaching a point w
here it will have spent more money to provide dialysis than it would to perform a transplant.
The hospital's fees for Edgar's dialysis would have reached about $92,000 already. A transplant would cost roughly
$114,000.
The hospital also wants to know whether Edgar's family will be able to pay $2,000 a month for the drugs he would have to take for the rest of his life to make sure his body does not reject its new organ.
The federal organization that sets organ transplant rules, the United Network for Organ Sharing, says no guidelines address whether hospitals can perform transplants on patients who are illegal immigrants. The organization says it is up to each hospital, and several have performed the operation on patien
ts who lack legal status.
A 12-year-old illegal immigrant from Mexico received a
stem cell transplant in Chicago in 200
1. The next year, a 31-year-old Guate
malan woman in this country without permission received a liver in Cleveland.
<
br>In Chicago, also in 2002, immigration authorities gave a Chilean family a one-year reprieve from deportation so an 11-year-old girl could receive a lung transplant.
In 2003, a 17-year-old woman died after a botched hear
t-lung transplant at Duke University Medical Center in North Carolina; her parents had brought her illegally to the United States in search of better medical care.
Edgar's mother, Consuelo, says it's unfair that her son cannot receive the life-changing kidney transplant he needs. She says an immigrant's legal status doesn't seem to matter much to Georgia employers, who hire tens of thousands of illegal immigrants to work in hotels and restaurants, poultry processing plants, carpet factories and on construction
and landscaping crews.
"It shouldn't matter if a person has pape
rs or not," she says. "If a pers
on's life is important, it doesn'
t matter if he is documented or undocumented."
Kidney is available
Edg
ar's father says he wants to give one of his kidneys to his son. Doctors tested him to see if that's medically possible.
It is.
Now money is the main obstacle.
The federal government provides medical coverage to U.S. citizens who are poor, but Congress blocked i
llegal immigrants from most benefit programs in 1996. It left one program to deal with cases of acute medical emergency.
Illegal immigrants can receive Emergency Medical Assistance, commonly called Emergency Medicaid, if they meet income and other requirements. The state says most Emergency Medicaid payments in Georgia pay for childbirths to illegal immigrants.
The state and federal government paid $58.1 million in Emergency Medicaid benefits to 15,210 p
eople in Georgia in the budget year that ended in August 2002, a 34
percent increase in cost from the year before,
the Georgia Department of Community Health s
ays.
In Georgia, Medicaid will pay for kidney transplants and immunosuppressant drugs for
U.S. citizens who meet income and other requirements, but some poor U.S. citizens could find themselves in Edgar's situation.
As for illegal immigrants, Emergency Medicaid does not cover dialysis or organ transplants. A bill in Congress would change that, but the Alien Child Organ T
ransplant Act has gone nowhere since Rep. Luis Gutierrez, an Illinois Democrat who is not related to Edgar, introduced it last year.
So the boy waits.
Suicidal thoughts
Edgar says he wanted to kill himself when he found out he could not receive a transplant.
One day at the hospital, a nurse asked to speak with his mother in the hall. Edgar tiptoed to the door to eavesdrop.
"She told my mom I couldn't have a kidney because I
don't have papers or insurance," he says in En
glish.
Edgar told his mom he wanted to jump
out a window. He said he was only creating probl
ems.
His mother wept.
She told Edgar to be strong, not to worry, but she worried. She took
him to see a Catholic priest named Juan Carlos Arce.
"Edgar told me his family's problems would be solved if he were dead," the priest says.
Arce says he encouraged Edgar to see his parents' worry as a sign of their love. He told Edgar that mothers and fathers often fret when their children are in need.
Edgar t
alked with a psychologist and came to see that the priest and his parents wanted to help.
He stopped talking about suicide.
The Immaculate Heart of Mary Catholic Church distributed 2,000 fliers encouraging people to contribute to an Edgar's Transplant account at Wachovia Bank. The church got involved after Edgar and his family visited one Sunday. Arce helped lead an effort to raise money.
Youth groups sold tacos at soccer ga
mes. An American couple in the church offered to adopt
Edgar so he could get insurance, and then a transpla
nt, but attorneys say that would take too long.
So far the church has raised $15,179.
Recentl
y Edgar's family has talked about returning to Mexico. They don't have enough money to pay for a transplant in this country. They figure they may have better luck finding help in their native country, but that is far from certain.
The Mexican government pays for dialysis and transplants for some of its poor people, but Edgar's parents say they did n
ot know about the program, and it's not clear whether the boy would qualify.
"I'm thankful for everything that has been done for my son," Edgar's mother says.
Limited milk, soccer
Edgar gets dialysis every Monday, Wednesday and Friday.
While his classmates sing in first-period chorus, Edgar lies in a hospital bed and looks up at a tele
vision tuned to the Cartoon Netw
ork.
One morning, Edgar watches incredible animal m
achines with unbelievable powers fight in a distant unive
rse.
"Prepare to launch the anti-Zoid missiles," a voice says.
Clear plastic tubes snake over th
e rails of Edgar's bed to connect a catheter in his chest to a machine taller than he is. One tube carries blood from inside the boy's chest. The machine cleans his blood and pumps it back into his body, a process that saps his energy.
A family friend meets Edgar after the treatments. Sometimes the boy is so tired she takes him home so he can sleep. Other days she delivers him to the seventh grade at
Sequoyah Middle School in DeKalb County.
Classmates ask why Edgar misses so much school.
"I just tell them I had a vacation," he says. "They might say, 'How can you be sick?' I think they are going to tell me that I don't look sick."
At lunch, Edgar asks who wants his chocolate mi
lk. Doctors told him
not to drink too much milk while he is on dialysis. Edgar can
't have too much sodium, either. French fries are out.
Doctors implanted a catheter in the right side of Edgar's chest. It's where the tubes go for dialysis. Sometimes yo
u can see the gauze and white tape that cover it through his shirt.
Edgar doesn't play soccer with other kids because he worries the ball would hit him in the chest and dislodge the catheter. That could cause searing pain and lead to infection.
"I don't feel good playing with the other children," Edgar says. "They would have to kick the ball really slowly to me."
Sometimes he goes outside with his little brother, who knows to kick the ball gent
ly.
"I want to be like other children, to be happy, to play like them," Edgar says. "They can do whatever they want."
'What is stress?'
After more than a year in the United States, Edgar, now 13, speaks
English w
ell enough to understand his teachers, but his absences make it ha
rd to keep up.
He looks bored in health class, as the teac
her moves from desk to desk to quiz students on vocabulary. At Edgar's desk, the teacher peers down at the shock of wavy black hair
tumbling toward the boy's forehead.
"Can you tell me what stress is?" the teacher asks. "What is stress?"
Edgar says nothing.
Next period, Edgar's social studies teacher talks about migration. He asks students why people move from one country to another. They answer: freedom, education, money.
Edgar lifts his head from his desk when the teacher talks about Latinos. He says businesses in Georgia depend on their labor. Just go to a hotel or restaurant, he says, and you'll see Mexicans working. He says they
come here to work and help their families.
That night is like any other night in Edgar's apartment. He does homework, watches TV.
Then it's off to bed.<
r
br>
In the morning, he awakens before sunrise, walks downstairs
and pours a bowl of cereal.
His dad comes down, running late,
and puts a hand on his son's shoulder. They walk out in the darkness. They get in that van and go to the hospital.
http://www.ajc.com/metro/content/metro/0404/25edgar.html
Boy's illness draws desperate family to U.S.
What they did broke the law, but it's kept their son alive
By MARK BIXLER
The Atlanta Journal-Constitution
Published on: 04/24/04
Edgar Gutierrez gets out of bed before sunrise, walks downstairs and eats a bowl of cornflakes.
The 12-year-old rubs his eyes and stares out a living room window. Five minutes pass. He walks to the staircase and calls up in Spanish.
"Vamonos, Papa," he says. "Ya son las cinco y media."
Let's go, Dad
It's already 5:30.
A few minutes later, Edgar lies in the back seat of a Ford Aerostar and tries to sleep as his dad drives. The van turns by a blue road sign with the white letter "H,"
; a
d Edgar, whose kidneys have failed, ends up in a bed in the dialysis and transplant ward on the sixt
h floor of Children's Healthcare of Atlanta at Egleston.
The boy's father, Fidelmar, says he could not pay for Edgar's treatments on the $4,000 a year he earned as a carpenter in Mexico.
So he paid a smuggler to lead him across the border between Mexico and the United States, in violation of U.S. immigration law. Fidelmar planned to find work and send money to pay for Edgar's treatment in Mexico.
When the boy got sicker, Fidelmar paid a smuggler to bring his son to Atlanta, too. He found the treatments his son needed. He did not find an end to his son's problems.
The dialysis that Edgar receives free from the hospital normally costs $1,84
5 a week.
Hospital administrators say Georgia's growing illegal immigrant population is one reason the cost of treating uninsured patients is going up. The bigger reason, they say,
is
the
rise in the
number of U.S. citizens without health insurance, but a few hospitals near the Mexican border nearly have closed because
of the cost of treating large numbers of illegal immigrants.
In Mexico, Edgar's father watched for years as men left for the United States. Most left because some businesses on El Otro Lado --the Other Side --pay 10 times what a man can earn in Mexico, sometimes more.
The men knew that as long as an immigrant made it past the Border Patrol, he could live and work in the United States with little fear of detection. It was easy to buy fake documents that opened the door to work.
Companies on the Other Side did not seem to care whether workers were in the country with permission. Authorities hardly ever enforced laws against knowingly hiring an illega
l immigrant.
Yet Edgar's father never wanted to leave Mexico.
He says he preferred a simple country life in the state of MichoacÃԚ Ô�šÃ”š¡n, in central Mexico. He enjoyed livi
ng clos
e to hi
s parents and in-la
ws. It pleased him to see his children and their cousins ride bikes up and down dirt hills around their home. He says
he wanted to stay in those mountains forever.
Then Edgar got sick.
A border crossing
Fidelmar says he did what any father would do if his son's life was at stake.
He had to make more money to pay for Edgar's treatment. He headed north because a friend told him there were jobs to be found in Atlanta. He arrived on a Monday morning three years ago and found work within two weeks, driving a delivery truck from one Chinese restaurant to another. He sent a chunk of his earnings home to support his family and pay the doctors who treated Edgar.
He decided to bring his son to the United States when he had been in Atlanta for seven months, aft
er his wife called to say their son kept getting up in the night to use the bathroom, always seemed to have a fever, and fainted sometimes.
Fidelmar believed his son
would rece
ive better
medical care in the United
States.
One day he called his wife to say that a bus in a nearby town was leaving in two hours on the first leg of a journey to
Atlanta.
Fidelmar wanted Edgar on that bus.
Edgar remembers running in his sandals for an hour with his mother, brother and sister. Edgar's mother sobbed as they all climbed aboard the bus and rode north for about 30 hours.
After a night in a hotel just south of the U.S. border, they joined a group of more than two dozen people on the verge of crossing. They walked across the border --they're not sure where --and continued north for most of the day, Edgar says, through the stifling heat of a desert.
At night, after a guide served tuna mixed with eggs, Edgar walked away from the group to relieve himself. A Border Patrol sp
otlight pierced the darkness. Edgar dropped, covered himself with tree limbs, and lay still until the light went away.
He and the others in his group esca
ped detection.<
br>
The nex
t day, he and the others climbed i
nto two vans stopped by the side of the road. Someone had taken out the seats and people piled in the back, one on top of another.
E
dgar felt sorry for the people on the bottom. He imagined it was hard for them to breathe.
The vans went to a house in Phoenix, where people showered and ate. The people whom Edgar's family paid for passage drove them to Los Angeles. From there the family flew to Atlanta.
Hospitals cover costs
Edgar's mother took him to the hospital after they got to Atlanta.
The boy's kidneys were failing.
Federal law requires hospitals to treat patients with life-threatening illnesses, no matter their immigration status or ability to pay. The doctors who evaluated Edgar kept him in the hospital for two weeks.
B
y this time Fidelmar was earning $350 a week, more than he did in Mexico but not enough to pay for a two-week hospital stay or dialysis. The hos
pital charges rough
ly $615 for e
ach of Edgar's three-hour dialysis ses
sions. It covers the cost from its charity care fund, drawn from private donations and earnings from the hospital's operation.
Georgia hospitals report s
pending nearly $1 billion a year to treat poor patients without insurance.
The state makes it a condition of getting a hospital license: Every institution agrees to spend at least 3 percent of its gross revenue treating patients who cannot pay. In return the state provides hospitals with tax money to cover some costs of treating the uninsured.
Hospitals in Georgia spent $819 million of their own money to treat poor patients last year, and were reimbursed with at least $192 million in mostly public money. Those figures were up from $581 million and $157 million, respectively, in 1999
.
Experts cite several reasons.
More expensive prescription drugs increase the cost of treating all patients. More people l
ack health insurance. S
ome people in managed-
care plans are frustrated by attempts to see a doc
tor. They go to the emergency room, the most expensive place for routine care. Their insurance plans do not cover the visits, and sometimes the patients don't pa
y.
The growing number of illegal immigrants is also a reason, but it's hard to quantify because hospitals don't ask patients their immigration status.
"It is really not something we've been able to measure, but we do know anecdotally that, absolutely, there are a lot of costs being absorbed by the system, by hospitals treating illegal immigrants," says Kevin Bloye, spokesman for the Georgia Hospital Association. "I wouldn't say that it's the dominant factor in rising health care costs. It's one of many factors."
In 2002, 37 of 43 hospitals respondin
g to a survey from the National Association of Counties reported an increase in uncompensated health care costs. Sixty-seven
percent of respondents cite
d immigrants as a reason.<
br>
Another study in 2002 estimated that hospitals near
the U.S.-Mexican border spent $190 million a year treating illegal immigrants, about 25 percent of their total cost for uncompensated care.
In November, as an amendment to the Medicare pr
escription drug bill, Congress set aside $1 billion to help hospitals that treat large numbers of illegal immigrants. Hospitals in every state are eligible for money, but the funding formula favors hospitals in border states, such as Arizona, California and Texas.
The General Accounting Office, the research arm of Congress, is preparing its first report estimating the financial effect illegal immigrants have on hospitals around the United States.
Matter of life and death
Edgar needs a transplant, but no one knows whether he will get it.
Mont
hs after his mother first took Edgar to the hospital, his condition worsened. During one hospital visit, physicia
ns summoned Dr. Barry Warshaw,
an expert in treating children
with kidney problems.
Warshaw says he evaluated Edgar as h
e does any other patient, weighing his medical condition --not whether he had insurance --before ordering dialysis. He detected kidney scarring --doctors could not determine the cause --t
hat he blamed for the boy's illness.
"It's a life-or-death condition," Warshaw says.
The doctor ordered dialysis for Edgar, and the hospital began providing it.
"Within a short period, it would have been fatal without dialysis," he says.
Warshaw says he wants to transplant a kidney into Edgar, but administrators have a say in that decision. A team of doctors and administrators at Edgar's hospital recommends whether patients get on an organ transplant waiting list, the first step toward a transplant. The team has not put Edgar o
n the list. It wants to know how the family will pay for a transplant.
Doctors say that without
a transplant, Edgar will continue
to need dialysis. He can receive
dialysis indefinitely, they say, but the hospital is approaching a point w
here it will have spent more money to provide dialysis than it would to perform a transplant.
The hospital's fees for Edgar's dialysis would have reached about $92,000 already. A transplant would cost roughly
$114,000.
The hospital also wants to know whether Edgar's family will be able to pay $2,000 a month for the drugs he would have to take for the rest of his life to make sure his body does not reject its new organ.
The federal organization that sets organ transplant rules, the United Network for Organ Sharing, says no guidelines address whether hospitals can perform transplants on patients who are illegal immigrants. The organization says it is up to each hospital, and several have performed the operation on patien
ts who lack legal status.
A 12-year-old illegal immigrant from Mexico received a
stem cell transplant in Chicago in 200
1. The next year, a 31-year-old Guate
malan woman in this country without permission received a liver in Cleveland.
<
br>In Chicago, also in 2002, immigration authorities gave a Chilean family a one-year reprieve from deportation so an 11-year-old girl could receive a lung transplant.
In 2003, a 17-year-old woman died after a botched hear
t-lung transplant at Duke University Medical Center in North Carolina; her parents had brought her illegally to the United States in search of better medical care.
Edgar's mother, Consuelo, says it's unfair that her son cannot receive the life-changing kidney transplant he needs. She says an immigrant's legal status doesn't seem to matter much to Georgia employers, who hire tens of thousands of illegal immigrants to work in hotels and restaurants, poultry processing plants, carpet factories and on construction
and landscaping crews.
"It shouldn't matter if a person has pape
rs or not," she says. "If a pers
on's life is important, it doesn'
t matter if he is documented or undocumented."
Kidney is available
Edg
ar's father says he wants to give one of his kidneys to his son. Doctors tested him to see if that's medically possible.
It is.
Now money is the main obstacle.
The federal government provides medical coverage to U.S. citizens who are poor, but Congress blocked i
llegal immigrants from most benefit programs in 1996. It left one program to deal with cases of acute medical emergency.
Illegal immigrants can receive Emergency Medical Assistance, commonly called Emergency Medicaid, if they meet income and other requirements. The state says most Emergency Medicaid payments in Georgia pay for childbirths to illegal immigrants.
The state and federal government paid $58.1 million in Emergency Medicaid benefits to 15,210 p
eople in Georgia in the budget year that ended in August 2002, a 34
percent increase in cost from the year before,
the Georgia Department of Community Health s
ays.
In Georgia, Medicaid will pay for kidney transplants and immunosuppressant drugs for
U.S. citizens who meet income and other requirements, but some poor U.S. citizens could find themselves in Edgar's situation.
As for illegal immigrants, Emergency Medicaid does not cover dialysis or organ transplants. A bill in Congress would change that, but the Alien Child Organ T
ransplant Act has gone nowhere since Rep. Luis Gutierrez, an Illinois Democrat who is not related to Edgar, introduced it last year.
So the boy waits.
Suicidal thoughts
Edgar says he wanted to kill himself when he found out he could not receive a transplant.
One day at the hospital, a nurse asked to speak with his mother in the hall. Edgar tiptoed to the door to eavesdrop.
"She told my mom I couldn't have a kidney because I
don't have papers or insurance," he says in En
glish.
Edgar told his mom he wanted to jump
out a window. He said he was only creating probl
ems.
His mother wept.
She told Edgar to be strong, not to worry, but she worried. She took
him to see a Catholic priest named Juan Carlos Arce.
"Edgar told me his family's problems would be solved if he were dead," the priest says.
Arce says he encouraged Edgar to see his parents' worry as a sign of their love. He told Edgar that mothers and fathers often fret when their children are in need.
Edgar t
alked with a psychologist and came to see that the priest and his parents wanted to help.
He stopped talking about suicide.
The Immaculate Heart of Mary Catholic Church distributed 2,000 fliers encouraging people to contribute to an Edgar's Transplant account at Wachovia Bank. The church got involved after Edgar and his family visited one Sunday. Arce helped lead an effort to raise money.
Youth groups sold tacos at soccer ga
mes. An American couple in the church offered to adopt
Edgar so he could get insurance, and then a transpla
nt, but attorneys say that would take too long.
So far the church has raised $15,179.
Recentl
y Edgar's family has talked about returning to Mexico. They don't have enough money to pay for a transplant in this country. They figure they may have better luck finding help in their native country, but that is far from certain.
The Mexican government pays for dialysis and transplants for some of its poor people, but Edgar's parents say they did n
ot know about the program, and it's not clear whether the boy would qualify.
"I'm thankful for everything that has been done for my son," Edgar's mother says.
Limited milk, soccer
Edgar gets dialysis every Monday, Wednesday and Friday.
While his classmates sing in first-period chorus, Edgar lies in a hospital bed and looks up at a tele
vision tuned to the Cartoon Netw
ork.
One morning, Edgar watches incredible animal m
achines with unbelievable powers fight in a distant unive
rse.
"Prepare to launch the anti-Zoid missiles," a voice says.
Clear plastic tubes snake over th
e rails of Edgar's bed to connect a catheter in his chest to a machine taller than he is. One tube carries blood from inside the boy's chest. The machine cleans his blood and pumps it back into his body, a process that saps his energy.
A family friend meets Edgar after the treatments. Sometimes the boy is so tired she takes him home so he can sleep. Other days she delivers him to the seventh grade at
Sequoyah Middle School in DeKalb County.
Classmates ask why Edgar misses so much school.
"I just tell them I had a vacation," he says. "They might say, 'How can you be sick?' I think they are going to tell me that I don't look sick."
At lunch, Edgar asks who wants his chocolate mi
lk. Doctors told him
not to drink too much milk while he is on dialysis. Edgar can
't have too much sodium, either. French fries are out.
Doctors implanted a catheter in the right side of Edgar's chest. It's where the tubes go for dialysis. Sometimes yo
u can see the gauze and white tape that cover it through his shirt.
Edgar doesn't play soccer with other kids because he worries the ball would hit him in the chest and dislodge the catheter. That could cause searing pain and lead to infection.
"I don't feel good playing with the other children," Edgar says. "They would have to kick the ball really slowly to me."
Sometimes he goes outside with his little brother, who knows to kick the ball gent
ly.
"I want to be like other children, to be happy, to play like them," Edgar says. "They can do whatever they want."
'What is stress?'
After more than a year in the United States, Edgar, now 13, speaks
English w
ell enough to understand his teachers, but his absences make it ha
rd to keep up.
He looks bored in health class, as the teac
her moves from desk to desk to quiz students on vocabulary. At Edgar's desk, the teacher peers down at the shock of wavy black hair
tumbling toward the boy's forehead.
"Can you tell me what stress is?" the teacher asks. "What is stress?"
Edgar says nothing.
Next period, Edgar's social studies teacher talks about migration. He asks students why people move from one country to another. They answer: freedom, education, money.
Edgar lifts his head from his desk when the teacher talks about Latinos. He says businesses in Georgia depend on their labor. Just go to a hotel or restaurant, he says, and you'll see Mexicans working. He says they
come here to work and help their families.
That night is like any other night in Edgar's apartment. He does homework, watches TV.
Then it's off to bed.<
r
br>
In the morning, he awakens before sunrise, walks downstairs
and pours a bowl of cereal.
His dad comes down, running late,
and puts a hand on his son's shoulder. They walk out in the darkness. They get in that van and go to the hospital.