I am VERY excited to share the following article with you. It was written by a college student, who is studying journalism. I am thrilled that cord blood awareness is growing in popularity daily. You can help, every voice counts……please help spread the word about this amazing cause!
By LUISDES DIAZ
Natalie Curry, of Long Island City, Queens, wasn’t supposed to live past the age of 10.
Now 24, she had to overcome Fanconi anemia, a rare, inherited blood disease that causes bone marrow to fail. She says she is the first U.S. citizen to be cured of a disease by blood from an umbilical cord and is determined to spread the word that more people can be saved in the same way.
So she shows up at an interview at the corner of 24th Street and 6th Avenue in Manhattan, explaining, “I wouldn’t be here if it wasn’t to raise awareness about what saved my life.”
She swings the heavy door of Starbucks open and arrives at what she calls her purpose in life: Curry hasretold her story thousands of times and will continue to do so in order to reach as many people as she can. This is why she is working on a book about her experience, trying to help the Save the Cord Foundationspread the message that blood from the umbilical cord is a rich source of stem cells with a potential to cure some 70 diseases.
“I don’t think I would have survived if it wasn’t to do this,” Curry says, left hand on her heart. “I really believe this is my purpose.”
Her story began when her parents, Brad and Lee Ann Curry, anxiously welcomed their first-born in January, 1985 in New Albany, Indiana. Within seconds of Natalie’s first breaths, the doctors, nurses and parents knew something was wrong. She was born with missing fingers, deformed arms and very low weight.
After 13 months of tests with no conclusive answers, the Currys traveled to Louisville, Kentucky, where they met Dr. Joe Hirsh, a genetics specialist who diagnosed Natalie with Fanconi anemia, an extremely rare blood disease that is characterized by short stature, skeletal anomalies, and increased incidence of solid tumors, leukemia and bone marrow failure. This genetic mutation is passed on only in the rare case of two recessive genes coming together.
“My parents weren’t compatible bone marrow donors, and at the time that was my only chance at survival, which is why my parents had my sisters,” Curry says, as she looks out the window in a thoughtful stare, takes a deep breath and continues to speak about her unique relationship with her sisters. “Audrey and Emily were born to save my life.”
At that time a bone marrow transplant was the only solution to Fanconi anemia, and the Currys hoped that their daughters born in 1987 and 1988 might be compatible donors.
While pregnant with Emily, Lee Ann Curry began to research alternate options to save her daughter’s life. She stumbled upon a procedure, which at the time was still very experimental: a stem-cell transplant using cord blood.
Cord blood is the blood that remains in an umbilical cord after the baby is delivered. This blood is rich in stem cells, which can fix or replace diseased or damaged cells such as brain, muscle, and heart cells. This makes cord blood unique from the other types of blood used in stem cell transplant.
Cord blood stem cells are primarily being used in transplant medicine to restore a patient’s blood production and immune system. In order to transplant cord blood stem cells, chemotherapy or radiation is used to kill the bad cells. Stem cells are then introduced into the body so that they can travel to the damaged area and repair it by creating new healthy cells. Cord blood has been proven to cure such diseases as leukemia, many types of lymphomas, sickle cell, Fanconi anemia and more.
Cord blood, it turned out, would be more effective than a bone marrow transplant. Emily Curry was born a perfect human leukocyte antigen match, which was more than the Curry family had hoped for. “It’s like she was my twin, just born at a different time, our blood is exactly the same,” Natalie Curry said, eyes open wide as she explained the odds of this happening are 1 in a million.
She characterizes this as miracle, one Curry adds to her list of reasons why she is meant to speak about her life.
Congress passed the Stem Cell Therapeutic and Research Act in 2005 to help more patients who need a bone marrow or cord blood transplant, providing support for umbilical cord blood transplantation and research, according to the U.S. Department of Health and Human Services. New York also became one of the first states to mandate education on umbilical cord blood; the State Department of Health will develop a program to inform the public of the potential health benefits of cord blood preservation.
This law is a dream come true for Curry, since back in 1988 she and her family had to move to Paris for three months for the procedure to be done. “People shouldn’t take for granted the benefits of cord blood, especially when it’s now offered in the very country they live in” Curry says, worried that many aren’t getting the information they need from their physicians.
Curry fears that a dispute over whether cord blood should be banked by public or private entities will leave many confused about what to do, as physicians have begun to take sides. According to The New York Blood Center, many physicians don’t recommend private cord blood banking because of the chances that it won’t be useful in the future and questions about whether or not it’s cost effective. The alternative is public cord blood banking, which doesn’t guarantee that the blood will be there for the donor’s use in the future, but could in turn save the lives of many who are currently battling a fatal disease.
According to the New York Blood Center, there are now 33,00 cord blood donations, allowing for a graft of cord blood to be identified for 85 percent of the patients who seek a search.
Natalia Agudelo of Elmont is among those who decided to bank her child’s cord blood after birth; cord blood from the births of her two sons is safely stored in case of a medical emergency.
Agudelo said she was fortunate to have a doctor educated in this. “Obstetrician-gynecologists need to be educated since they are the primary authority expecting parents listen to in these matters, and who are dissuading them the most,” Curry says.
Agudelo said she made the decision to protect her children. “I am confident they are secure for the rest of their lives thanks to our decision to save their cord blood,” she said. The Agudelo family chose Life Line Cryogenics, of Stamford, Conn., to preserve the umbilical cord blood.
Agudelo chose this company because of the price and its reputation. A typical fee for extracting, transporting, and preserving the cord blood for a 21-year period runs on average about $5,000 per procedure, which for most families is too expensive.
The process itself is simple, Agudelo explains: “Fill out paper work. Then they send you a kit in the mail, you take it to the hospital on the birth day, the doctor stores the extracted blood in the kit, we call the company, they send their transport carrier and that’s it, painless.”
Agudelo said it was worth the cost. “I don’t regret my decision for one second. I live for them, so I will do everything I can to help them in their future,” she said.
Curry is aware of the economic factors that tend to dissuade many families from choosing to store their baby’s cord blood. “I am confident that with awareness, will come an increase in demand for this procedure, and therefore the price will go down so that all parents have a chance to save their baby’s cord blood for their own use in the future,” she said.
Diane Vega, a representative of Cyro-Cell, which says it is the largest family cord-blood bank, said cord blood stem cells provide hopeful results in a variety of areas such as spinal cord injury. “There are also many diseases and injuries that can be fixed,” she said. “Though they are still very experimental, they hold promising results in the future of stem cell transplant.”
As Curry’s story comes to an end, she refers back to the fact that cord blood preservation remains unknown to many. “It still amazes me to know that people are just finding out about this, when it’s been going on for so long, almost as far back as the ’70’s in some countries,” she says. “Imagine how many lives could have been saved.”
Curry stands up from the chair she’s been sitting on for the past hour as she told her story to a stranger, and says, “It makes me so happy to know people are becoming interested. Spread the word.”
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