Cota
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Joined: Jun 2004
Posts: 1,354
From: Pleasant Hill, CA
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Cota
Hey,
I want you guys to take the time to read this. I don't know if this is the approiate place to put this. This is a good friend of our family. My parents are the trustee's aand I have been helping them. Anyways, we are still trying to raise money to cover her medical bills. Her insurance covers most of it, but does not cover copays. I have containers where you can donate money and I want to know if anyone can put them at their place of business, or if anyone would want to make a possible dontation. If you have any questions feel free to ask. I am sorry if I have offended anyone by posting this. This article I cut and pasted was on the front page of the contra costa times.
Martinez teen with rare disorder gets chance at normal life
By Liz Tascio
CONTRA COSTA TIMES
The chemotherapy to destroy Jhyrve Sears' defective blood and immune system was administered every day for eight days.
On the fifth night, doctors added a drug that ensured the chemotherapy was working to rid her of her own blood and with it, a rare genetic disorder known as Krabbe disease. That brought on two nights of high fever and violent shaking. Her mother and a nurse held her down to keep her still.
On the ninth day, Jhyrve rested, exhausted. She was 3,000 miles from her Martinez home in a hospital room at Duke University Medical Center in North Carolina. Her father flew in at midnight to be with her during the main event of the treatment.
On the 10th day, April 1, 2004, Jhyrve curled up in her hospital bed and slept while a nurse quietly oversaw the infusion into a catheter in her chest of umbilical cord blood, donated from a little boy in New York.
Instead of being a few short years from death, Jhyrve, then 16, was getting a chance at a normal life.
'A rare disease'
Duke University physicians have completed about 600 cord blood transplants since 1993, 36 in patients with Krabbe disease, a rare genetic disorder that usually kills children before they are 2 years old.
The transplants still are an experimental treatment.
Half of the treated Krabbe (kra-BAY) patients at Duke have survived and are benefiting from the transplant, said Dr. Joanne Kurtzberg, Jhyrve's physician and the director of Duke's pediatric stem cell transplant program.
The stem cells in cord blood grow inside bone marrow, Kurtzberg said, creating a factory for new cells that will provide a critical enzyme that is lacking in Krabbe patients. Without the enzyme, a protein builds up and degrades the nervous system's protective coating, myelin. The patient gradually loses control over his or her body, suffers brain damage and dies.
Though used like a bone marrow transplant as a source of stem cells, cord blood doesn't need to be as closely matched to the patient's tissue type, and it is available quickly, frozen and stored in blood banks.
There are drawbacks: Only a small amount comes from each newborn's cord and placenta, so the cells take longer to engraft in a patient, leaving him or her vulnerable to infection. If the first transplant fails, doctors have to find another donor.
Cord blood donation isn't tied up in the controversy over stem cell research.
"Cord blood is a newborn rather than a fetal source of stem cells," said Dr. David Harris, director of the Cord Blood Registry Stem Cell Bank in Arizona, a private bank.
Most mothers who are asked agree to donate, but public banks don't have the resources to reach more, said Melissa Penn, spokeswoman for the New York Blood Center, which provided the cord blood for Jhyrve.
"The truth is that most moms don't have that option," Penn said.
The center staffs just five hospitals, five days a week. Since 1993, the center has collected 25,000 units of cord blood, 1,500 of which have been transplanted. The program receives no federal funding. Donations are anonymous.
Currently, there is no federal registry of cord blood donations for doctors to check, said Patrick Thompson, spokesman for the National Marrow Donor Program, a nonprofit organization that maintains a network of blood banks and a registry of more than 30,000 donated units.
Congress in 2004 earmarked $9 million to increase the national inventory of cord blood, but those funds are on hold while the idea is studied.
In the Bay Area, Children's Hospital Oakland collects cord blood from any family in the country with certain medical needs. The hospital mails kits to birth parents and instructs hospitals about the process. The hospital stores the blood, currently about 1,500 units, in case the family needs it.
Children's Hospital has been asked to participate with Duke in a trial for cord blood transplants in Krabbe patients, said Dr. Mark Walters, director of the Children's Hospital blood and marrow transplant program.
"It's such a rare disease ... no single center has a lot of experience" treating it, he said.
A normal lifespan
It was at Children's Hospital that Jhyrve finally found out the source of her health problems. Growing up, she had aches and pains, and in the past two years, she had to use crutches, then a wheelchair.
"Last summer ... I was arguing with the pediatrician, and I said, 'I want to go to a neurologist,'" said Jhyrve's mother, Karen Sears.
At Children's Hospital, a neurologist watched Jhyrve walk down a hallway.
"She leaned in to me and said, 'You're not crazy,'" Sears said. "She should have been diagnosed (with neurological problems) by the time she was 8."
A test done at a Pennsylvania lab came back in March showing that Jhyrve had Krabbe. The next 10 days went by in a flurry of phone calls, insurance forms and emotional goodbyes. Jhyrve and Karen Sears packed for a temporary move from their home in Martinez to Durham, N.C.
Before they left, Jhyrve went to her school, Pleasant Hill Adventist Academy, to say goodbye to a group she'd been part of, The Singers. They gathered around her and sang an emotional benediction: "And until we meet again, may God hold you in the palm of his hand."
Though the recovery after a transplant takes years, Jhyrve may now have a normal lifespan. The protective covering over her brain, damaged by Krabbe, could heal, and a tremor could disappear.
"She could walk away with no symptoms at all," said Karen Sears.
Jhyrve has been helping doctors at Duke learn more about the treatment's effects, because unlike the infants who typically receive it, Jhyrve can talk about it.
"She does a better job helping us understand when she's in pain," Kurtzberg said. "We've learned a lot from her descriptions."
'Best birthday present'
Jhyrve still hopes to graduate with her class in the spring. She received school books from the public school system in North Carolina, and when she feels better, she'll start trying to catch up.
Karen Sears said Jhyrve may be ready to come home in January, almost a year after she left. But the Searses' Martinez home needs serious repairs before then.
The drafty heating and air conditioning system, the moldy basement and windows would endanger her still-developing immune system.
Family friends Steve and Lise Wallace have been fund-raising for the Searses, who have been paying out of pocket for rent, food and plane tickets. They hope to find businesses willing to help repair the Searses' house.
In the meantime, Jhyrve and her mom live near Duke in a rented apartment, their days taken up with medical appointments and medication regimens.
"There is no fun," said her father, Paul Sears, who lives in Pleasant Hill with the couple's son, Lucas, 14. The couple separated last year. "When you go and visit, it's like work 24 hours a day. That's really what's missing."
Jhyrve, now 17, each day receives blood infusions, two steroids, 54 doses of medicine by mouth and six breathing treatments. She gets occupational and physical therapy.
Though mother and daughter are missing out on normal fun, Karen Sears marked the eve of her own birthday in late August with this thought:
"She's my best birthday present. She didn't die," Sears said. "I couldn't ask for any more."
Reach Liz Tascio at 925-977-8418 or ltascio@cctimes.com
IF YOU GO
LEARN MORE
• WHAT: Benefit dinner to help pay expenses for Sears family
• WHEN: Sept. 19 from 5 to 7 p.m.
• WHERE: Pleasant Hill
• CONTACT: Steve or Lise Wallace, 925-979-0052
IF YOU GO
LEARN MORE
For information about Krabbe disease and newborn screening, visit: www.huntershope.org
To find out more about cord blood donation, visit:
American Association of Blood Banks, www.aabb.org
Children's Hospital Oakland, www.childrenshospitaloakland.org
National Marrow Donor Program, www.marrow.org
New York Blood Center, www.nybloodcenter.org
www.parentsguidecordblood.com
I want you guys to take the time to read this. I don't know if this is the approiate place to put this. This is a good friend of our family. My parents are the trustee's aand I have been helping them. Anyways, we are still trying to raise money to cover her medical bills. Her insurance covers most of it, but does not cover copays. I have containers where you can donate money and I want to know if anyone can put them at their place of business, or if anyone would want to make a possible dontation. If you have any questions feel free to ask. I am sorry if I have offended anyone by posting this. This article I cut and pasted was on the front page of the contra costa times.
Martinez teen with rare disorder gets chance at normal life
By Liz Tascio
CONTRA COSTA TIMES
The chemotherapy to destroy Jhyrve Sears' defective blood and immune system was administered every day for eight days.
On the fifth night, doctors added a drug that ensured the chemotherapy was working to rid her of her own blood and with it, a rare genetic disorder known as Krabbe disease. That brought on two nights of high fever and violent shaking. Her mother and a nurse held her down to keep her still.
On the ninth day, Jhyrve rested, exhausted. She was 3,000 miles from her Martinez home in a hospital room at Duke University Medical Center in North Carolina. Her father flew in at midnight to be with her during the main event of the treatment.
On the 10th day, April 1, 2004, Jhyrve curled up in her hospital bed and slept while a nurse quietly oversaw the infusion into a catheter in her chest of umbilical cord blood, donated from a little boy in New York.
Instead of being a few short years from death, Jhyrve, then 16, was getting a chance at a normal life.
'A rare disease'
Duke University physicians have completed about 600 cord blood transplants since 1993, 36 in patients with Krabbe disease, a rare genetic disorder that usually kills children before they are 2 years old.
The transplants still are an experimental treatment.
Half of the treated Krabbe (kra-BAY) patients at Duke have survived and are benefiting from the transplant, said Dr. Joanne Kurtzberg, Jhyrve's physician and the director of Duke's pediatric stem cell transplant program.
The stem cells in cord blood grow inside bone marrow, Kurtzberg said, creating a factory for new cells that will provide a critical enzyme that is lacking in Krabbe patients. Without the enzyme, a protein builds up and degrades the nervous system's protective coating, myelin. The patient gradually loses control over his or her body, suffers brain damage and dies.
Though used like a bone marrow transplant as a source of stem cells, cord blood doesn't need to be as closely matched to the patient's tissue type, and it is available quickly, frozen and stored in blood banks.
There are drawbacks: Only a small amount comes from each newborn's cord and placenta, so the cells take longer to engraft in a patient, leaving him or her vulnerable to infection. If the first transplant fails, doctors have to find another donor.
Cord blood donation isn't tied up in the controversy over stem cell research.
"Cord blood is a newborn rather than a fetal source of stem cells," said Dr. David Harris, director of the Cord Blood Registry Stem Cell Bank in Arizona, a private bank.
Most mothers who are asked agree to donate, but public banks don't have the resources to reach more, said Melissa Penn, spokeswoman for the New York Blood Center, which provided the cord blood for Jhyrve.
"The truth is that most moms don't have that option," Penn said.
The center staffs just five hospitals, five days a week. Since 1993, the center has collected 25,000 units of cord blood, 1,500 of which have been transplanted. The program receives no federal funding. Donations are anonymous.
Currently, there is no federal registry of cord blood donations for doctors to check, said Patrick Thompson, spokesman for the National Marrow Donor Program, a nonprofit organization that maintains a network of blood banks and a registry of more than 30,000 donated units.
Congress in 2004 earmarked $9 million to increase the national inventory of cord blood, but those funds are on hold while the idea is studied.
In the Bay Area, Children's Hospital Oakland collects cord blood from any family in the country with certain medical needs. The hospital mails kits to birth parents and instructs hospitals about the process. The hospital stores the blood, currently about 1,500 units, in case the family needs it.
Children's Hospital has been asked to participate with Duke in a trial for cord blood transplants in Krabbe patients, said Dr. Mark Walters, director of the Children's Hospital blood and marrow transplant program.
"It's such a rare disease ... no single center has a lot of experience" treating it, he said.
A normal lifespan
It was at Children's Hospital that Jhyrve finally found out the source of her health problems. Growing up, she had aches and pains, and in the past two years, she had to use crutches, then a wheelchair.
"Last summer ... I was arguing with the pediatrician, and I said, 'I want to go to a neurologist,'" said Jhyrve's mother, Karen Sears.
At Children's Hospital, a neurologist watched Jhyrve walk down a hallway.
"She leaned in to me and said, 'You're not crazy,'" Sears said. "She should have been diagnosed (with neurological problems) by the time she was 8."
A test done at a Pennsylvania lab came back in March showing that Jhyrve had Krabbe. The next 10 days went by in a flurry of phone calls, insurance forms and emotional goodbyes. Jhyrve and Karen Sears packed for a temporary move from their home in Martinez to Durham, N.C.
Before they left, Jhyrve went to her school, Pleasant Hill Adventist Academy, to say goodbye to a group she'd been part of, The Singers. They gathered around her and sang an emotional benediction: "And until we meet again, may God hold you in the palm of his hand."
Though the recovery after a transplant takes years, Jhyrve may now have a normal lifespan. The protective covering over her brain, damaged by Krabbe, could heal, and a tremor could disappear.
"She could walk away with no symptoms at all," said Karen Sears.
Jhyrve has been helping doctors at Duke learn more about the treatment's effects, because unlike the infants who typically receive it, Jhyrve can talk about it.
"She does a better job helping us understand when she's in pain," Kurtzberg said. "We've learned a lot from her descriptions."
'Best birthday present'
Jhyrve still hopes to graduate with her class in the spring. She received school books from the public school system in North Carolina, and when she feels better, she'll start trying to catch up.
Karen Sears said Jhyrve may be ready to come home in January, almost a year after she left. But the Searses' Martinez home needs serious repairs before then.
The drafty heating and air conditioning system, the moldy basement and windows would endanger her still-developing immune system.
Family friends Steve and Lise Wallace have been fund-raising for the Searses, who have been paying out of pocket for rent, food and plane tickets. They hope to find businesses willing to help repair the Searses' house.
In the meantime, Jhyrve and her mom live near Duke in a rented apartment, their days taken up with medical appointments and medication regimens.
"There is no fun," said her father, Paul Sears, who lives in Pleasant Hill with the couple's son, Lucas, 14. The couple separated last year. "When you go and visit, it's like work 24 hours a day. That's really what's missing."
Jhyrve, now 17, each day receives blood infusions, two steroids, 54 doses of medicine by mouth and six breathing treatments. She gets occupational and physical therapy.
Though mother and daughter are missing out on normal fun, Karen Sears marked the eve of her own birthday in late August with this thought:
"She's my best birthday present. She didn't die," Sears said. "I couldn't ask for any more."
Reach Liz Tascio at 925-977-8418 or ltascio@cctimes.com
IF YOU GO
LEARN MORE
• WHAT: Benefit dinner to help pay expenses for Sears family
• WHEN: Sept. 19 from 5 to 7 p.m.
• WHERE: Pleasant Hill
• CONTACT: Steve or Lise Wallace, 925-979-0052
IF YOU GO
LEARN MORE
For information about Krabbe disease and newborn screening, visit: www.huntershope.org
To find out more about cord blood donation, visit:
American Association of Blood Banks, www.aabb.org
Children's Hospital Oakland, www.childrenshospitaloakland.org
National Marrow Donor Program, www.marrow.org
New York Blood Center, www.nybloodcenter.org
www.parentsguidecordblood.com
Last edited by princesschels22; Oct 5, 2004 at 02:16 PM.
Thread Starter
VIP Member
Joined: Jun 2004
Posts: 1,354
From: Pleasant Hill, CA
Car Info: na
Here is the donation information:
Donation addresses for Jhyreve Sears:
Wells Fargo Bank (any branch) Account # 2016426575 (please note: no tax receipt)
Mail check made payable to "Cota for Jhyrve S." to:
Children's Organ Transplant Association
2501 COTA Dr.
Bloomington, IN 47403
Secure credit card donations can be accepted online at www.cota.org.
Or you can give me or send my parents a check.
Thanks!
Oh, COTA will send you a tax receipt
Donation addresses for Jhyreve Sears:
Wells Fargo Bank (any branch) Account # 2016426575 (please note: no tax receipt)
Mail check made payable to "Cota for Jhyrve S." to:
Children's Organ Transplant Association
2501 COTA Dr.
Bloomington, IN 47403
Secure credit card donations can be accepted online at www.cota.org.
Or you can give me or send my parents a check.
Thanks!
Oh, COTA will send you a tax receipt
Last edited by princesschels22; Oct 5, 2004 at 02:34 PM.
Thread Starter
VIP Member
Joined: Jun 2004
Posts: 1,354
From: Pleasant Hill, CA
Car Info: na
OK, so if you have been watching the news and listening to the radio, extreme home make over is doing the house as we speak. I was over at the site today and tonight, I'll post pics later, its crazy! They actually tore the house down and it will be re-built in 56 hrs. (thats not decorating or landscaping) It's just amazing how fast they build stuff, ill keep you all updated.
Thread Starter
VIP Member
Joined: Jun 2004
Posts: 1,354
From: Pleasant Hill, CA
Car Info: na
Originally Posted by soundwave
woah, that's awesome. when are they going to have the family come back to see the new house? we should all park our subys there for support
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