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The Salt Lake Tribune, UT
June 3, 2007 Sunday
Tot's unusual heritage makes marrow donor hard to find
By Ana Breton The Salt Lake Tribune
TAYLORSVILLE - Jessica Gomez keeps a neat, colorful scrapbook of the
time her son went through hell.
Inside the binder are pictures of 3-year-old Jonah sprawled on a
hospital bed at Primary Children's Medical Center, with more than a
dozen tubes coming in and out of his tiny, pale body. The three-week
hospital stay - and the 32 blood transfusions he has undergone in his
short life - might not have been necessary if Jonah was Caucasian.
But Jonah's mother is Armenian and her husband, Jonah's father, is
Mexican - making a match for the bone marrow transplant he needs
extraordinarily difficult to find.
According to the National Marrow Donor Program, 10 percent of the 6
million donors on the national registry are Hispanic, and only 2
percent are of multiple races. Half of all donors - more than 3
million - are white.
"It's like a lottery ticket," Gomez said. "People are dying because
ethnicities aren't being represented."
A chance for Jonah: Jonah has two rare blood disorders and a
condition that impairs the function of his heart. While blood
disorders tend to affect blacks and Hispanics more often, few
minorities are registered bone marrow donors. Matches are based on
tissue type.
Jeff House, a spokesman for the national donor program, said most
people are reluctant to donate, hearing horror stories about how
painful the process is. Marrow is retrieved from the back of the
pelvic bone while a donor is under anesthesia.
House said the side effects are minimal and usually involve headaches
and nausea, not the extreme hip pain suggested in the past.
Only 800 new donors registered during the Gregg Schaub Donor
Foundation bone marrow drives held in Utah in late May. House said he
was hoping for 5,000.
"People think donating is about being in pain all the time," House
said. "Unless they are educated, Jonah is not going to have a
chance."
The only cure: Jonah has sickle-hemoglobin D disease, which turns
normally smooth red blood cells into C-shaped cells that clog the
bloodstream. That causes damage to vital organs, which can lead to an
early death.
He also has pyruvate kinase deficiency, which affects the enzyme in
red blood cells and alters their production of energy. He is the only
person in the world known to have been diagnosed with both of the
rare blood diseases, Gomez said.
Jonah also suffers from supravalvar pulmonary stenosis, a condition
that affects the function of the pulmonary valve of the heart.
Although they are not terminal, Jonah's blood conditions are
life-threatening. The only cure is a bone marrow transplant, which
would replace his diseased bone marrow with marrow from a healthy
donor.
Until he receives a transplant, Jonah's family takes precautions to
keep him healthy. All guests take off their shoes when entering their
home, and are encouraged to spread antibacterial gel on their hands.
The family tries to stay indoors November through March to avoid
crowds during cold and flu season. Instead of attending their church,
several community members visit the family.
"He needs . . . his own life": Still, Gomez knows she can't
completely restrict Jonah from the outside world. He starts preschool
next year.
"I take precautions to keep him healthy, but he needs to have his own
life just like any other kid," Gomez said. "He can't be a bubble boy
for the rest of his life."
The situation has put the family in financial strain. Gomez left her
job and moved into her parents' house to save money. She raises funds
through yard sales and takes donations through Jonah's Web site,
www.jonahgomez foundation.org.
"I know that finding a match is not easy," Gomez said. "But I know in
my heart that he will be cured."
---
* ANA BRETON can be reached at [email protected] Send comments about
this story to livingeditor@ sltrib.com.
June 3, 2007 Sunday
Tot's unusual heritage makes marrow donor hard to find
By Ana Breton The Salt Lake Tribune
TAYLORSVILLE - Jessica Gomez keeps a neat, colorful scrapbook of the
time her son went through hell.
Inside the binder are pictures of 3-year-old Jonah sprawled on a
hospital bed at Primary Children's Medical Center, with more than a
dozen tubes coming in and out of his tiny, pale body. The three-week
hospital stay - and the 32 blood transfusions he has undergone in his
short life - might not have been necessary if Jonah was Caucasian.
But Jonah's mother is Armenian and her husband, Jonah's father, is
Mexican - making a match for the bone marrow transplant he needs
extraordinarily difficult to find.
According to the National Marrow Donor Program, 10 percent of the 6
million donors on the national registry are Hispanic, and only 2
percent are of multiple races. Half of all donors - more than 3
million - are white.
"It's like a lottery ticket," Gomez said. "People are dying because
ethnicities aren't being represented."
A chance for Jonah: Jonah has two rare blood disorders and a
condition that impairs the function of his heart. While blood
disorders tend to affect blacks and Hispanics more often, few
minorities are registered bone marrow donors. Matches are based on
tissue type.
Jeff House, a spokesman for the national donor program, said most
people are reluctant to donate, hearing horror stories about how
painful the process is. Marrow is retrieved from the back of the
pelvic bone while a donor is under anesthesia.
House said the side effects are minimal and usually involve headaches
and nausea, not the extreme hip pain suggested in the past.
Only 800 new donors registered during the Gregg Schaub Donor
Foundation bone marrow drives held in Utah in late May. House said he
was hoping for 5,000.
"People think donating is about being in pain all the time," House
said. "Unless they are educated, Jonah is not going to have a
chance."
The only cure: Jonah has sickle-hemoglobin D disease, which turns
normally smooth red blood cells into C-shaped cells that clog the
bloodstream. That causes damage to vital organs, which can lead to an
early death.
He also has pyruvate kinase deficiency, which affects the enzyme in
red blood cells and alters their production of energy. He is the only
person in the world known to have been diagnosed with both of the
rare blood diseases, Gomez said.
Jonah also suffers from supravalvar pulmonary stenosis, a condition
that affects the function of the pulmonary valve of the heart.
Although they are not terminal, Jonah's blood conditions are
life-threatening. The only cure is a bone marrow transplant, which
would replace his diseased bone marrow with marrow from a healthy
donor.
Until he receives a transplant, Jonah's family takes precautions to
keep him healthy. All guests take off their shoes when entering their
home, and are encouraged to spread antibacterial gel on their hands.
The family tries to stay indoors November through March to avoid
crowds during cold and flu season. Instead of attending their church,
several community members visit the family.
"He needs . . . his own life": Still, Gomez knows she can't
completely restrict Jonah from the outside world. He starts preschool
next year.
"I take precautions to keep him healthy, but he needs to have his own
life just like any other kid," Gomez said. "He can't be a bubble boy
for the rest of his life."
The situation has put the family in financial strain. Gomez left her
job and moved into her parents' house to save money. She raises funds
through yard sales and takes donations through Jonah's Web site,
www.jonahgomez foundation.org.
"I know that finding a match is not easy," Gomez said. "But I know in
my heart that he will be cured."
---
* ANA BRETON can be reached at [email protected] Send comments about
this story to livingeditor@ sltrib.com.