Jan
3

Check out Recent Article written about MY story and Cord Blood

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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.”

Nov
8

A Thanksgiving Blessing

Audrey and I

Audrey and I

It is almost exactly 20 years ago to the day when we came home from Paris France. The following is another excerpt from my upcoming book.

After a successful cord blood transplant, the day had finally arrived, on November 18th, 1989 we left Paris and headed home.  A giant pink “Welcome Home Natalie” sign was hanging on the garage door! But most importantly waiting on the inside was my little sister, Audrey.  She had been waiting three months, thinking that we had all died or left her for good. She was over joyed to see her family walk in the door. She gave me the biggest hug as if to say, please don’t ever leave again. Audrey was only two years old and was already much taller than me. She wrapped her arms around me picked me up and swung me around the room.  I remember not wanting to let go of her, hoping that she would never be far away again. I was VERY close to Audrey and had missed her more than I have ever missed anyone. It was exactly the reunion everyone had hoped for.

We arrived home just in time for the Thanksgiving holiday.  That year we had soooo much to be thankful for.  It brings tears to my eyes to imagine the families who suffer the loss of a loved one, especially through the holidays. My family was extremely lucky that our story had a happy ending. Sadly many families aren’t as lucky, it is my dream that more and more families will have the same blessings. By raising awareness, we can help save lives. Be thankful for all of the people in your life, NEVER let a day go by that you don’t show them how much you care! Keep the families and people who are suffering in your hearts.

Happy Thanksgiving,

Natalie Curry

Nov
2

What is Cord Blood?

belly buttonSince my goal is to raise educational awareness of cord blood preservation I thought the best place to start must be to explain exactly what cord blood is.  Nine times out of ten when I talk to people about the importance of this cause the first question they ask is, what is cord blood?

So, I am going to tell you exactly what it is.  Cord blood-  the blood that is found inside of a babies umbilical cord at the time of birth.   Just in case you don’t know what the umbilical cord is, it is the cord that is connected from the mother to the baby during the pregnancy that provides the baby with all of it’s nutrients to survive.

Now that you know what it is, I can tell you WHY it’s so important! The blood found inside the cord is extremely rich with stem cells. But not just stem cells, they are extra special in that they are easily adaptable to any part of the body. They can be used to treat everything from blood diseases such as Fanconi’s Anemia and Lymphoma to various medical conditions such as deafness and heart conditions and most reccently even grow new organs.  After birth, 99% of the time the umbilical cord is tossed into the trash. Until the late 80′s doctors and researchers weren’t aware of the life saving benefits of the umbilical cord blood, so this was completely acceptable.  NOT anymore, the times have changed. Doctors and researchers have made tremedous breakthroughs with the use of cord blood and it is not longer acceptable for it to be tossed in the trash.

With so many misconceptions of cord blod and the lack of understanding pretaning to it, people are continuing to allow it to be discarded as medical waste. To put it simply, this has got to stop. By tossing the cord blood, you are basically throwing a life away.

Now that you know what cord blood is and a why it’s super important, you can help spread the word to others!

Together We CAN Help Save Lives,

Natalie Curry

Oct
1

Fear of the Unknown

I wanted to share another story from my upcoming book.  This is a story from the very beginning about how my family dealt with my birth and the surprises surrounding it……….

 

On January 11th, 1985 the day finally arrived! With the delivery room full of all of the expected emotions and the waiting room filled of all of their family and friends Mom and Dad were ready to welcome there first child. Then the unthinkable happens, a moment that is supposed to fill their hearts with happiness soon turned to shock, confusion and fear. From the minute I was born it was clear that I was not normal. When my mom looked at her new baby girl she was devastated to find that, not only was I tiny but I was also missing fingers on my left and right hand. And as she would find out later these were just the beginning of the problems. A fear and sadness filled her heart, a moment that is described by many parents as the best day of there lives had become a living nightmare for mine! The worst part for them was not knowing if I was even going to live through the night?  As dad approached the waiting room his eyes filled with tears and everyone quickly knew something was terribly wrong.  Overcome with feelings of worry, no one was sure what would happen next.  That was the day, the day, that was the beginning of a very long journey. That would test a marriage, family relationships and lead everyone down a long tumultuous path.

 This is only a small part of this story, much more can be found in my upcoming book.

No parent should have to suffer the fear of the unknown and this is why saving cord blood should be mandatory! No one ever expects this to happen to them.  But just in case it does wouldn’t you feel much better knowing there is a cord blood match out there somewhere for your baby.

If you have any questions about cord blood please feel free to ask!

Together We CAN Help Save Lives,

Natalie Curry

 

 

 

Oct
3

Kidney Transplant Day- Part II

Continued from “The Special Two”-Kidney Transplant Day: Part I

 

………….As my family waited anxiously in the waiting room , the hours seemed to pass like weeks and the seconds like days. Five hours later some relief finally came, when Emily came out of surgery. She was doing as well, as could be expected and taken directly to a room.  The anticipation continued to build when 5 hours later no one had heard anything about me. Mom and dad began to get very concerned at the 10 hour mark and were begging for some answers.  Had the perfect opportunity to save my life just turned into the perfect nightmare?

A couple of hours later a doctor approached the waiting area to explain my condition.  The head of surgery began by expressing,  that he was upset because he was interrupted during his dinner, to come to the hospital and help with the transplant. “They called me during my dinner to come here and finish the mess they created.” In response to the doctors attitude, Dad now says, he was surprised he didn’t hit him.  An error in the placing of Emily’s kidney caused them to take the kidney out, put it on ice and place it in a different location in my body.  Mom and dad followed the doctor to the ICU recovery room to see me for the first time after surgery.  When they reached my room, moms knees hit the hard floor as tears rolled down her cheek.  To mom and dad I was nearly unrecognizable, my face and entire body were so swollen from fluid,  that I had to be  connected to a ventilator.  Since the surgery had lasted twice as long as expected,  the doctors induced a coma to allow my body to heal easier and quicker. As dad picked mom up off the floor they made there way back to the waiting area.  Greeted with very anxious family members they explained what was going on.  Everyone was flooded with emotions, they were concerned but extremely grateful that I was alive. Cindy recalls this moment, as a moment that left no dry eye in the room.

For the next two days I remained in a coma. When I finally woke up I couldn’t talk because I was still on the ventilator and my eyes were so swollen that I could barely see.

My New Firsts:

First Face I saw: Jeff

First voice I heard: Mom

First “I love you”: Dad

First tears I saw: Emily

First hug: Audrey

First Thought: Oh my gosh I’m alive, Is Emily OK?

I couldn’t talk, so I would write down what I wanted to say.  I wasn’t in a lot of pain, but  my mouth was full of sores and was extremely dry.  The first few days are very blurry but what I do remember, I will never forget. Emily was on a different floor of the hospital than I was, so everyone went back in forth from her room to mine. However, I was NEVER alone, someone was always there. The day that I woke up Dad brought Emily down in a wheel chair. He put the wheel chair on the left hand side of my bed, Emily reached out and touched my hands with tears rolling down her face. This moment broke my heart, I hated that I had made her cry.

This is just one excerpt,  there is much more to this story and many others that can be found in my upcoming book. 

Please let me know your thoughts!

Together We CAN Help Save lives,

Natalie Curry

Oct
1

Grey’s Anatomy Saves the Cord

One of My Favorite Characters on Grey's Anatomy- Dr (Arizona) Robbins

One of My Favorite Characters on Grey's Anatomy- Dr (Arizona) Robbins

When I started this web site my intentions were to raise awareness for cord blood/stem cells. Everyday I make it my priority to learn more about what is going on the world of cord blood, so that I can help spread the word! When I happen upon other people who are educated about, or who share my passion for cord blood, I get VERY excited.  One of the best moments yet,  was while I was watching one of my favorite TV shows the other night.  Grey’s Anantony  continues to pull me in with it’s inspiring characters and amazing medical stories.

The last episode that I watched was especially poignant. In one of the scenes, a baby is born through an emergency C-Section, when her arm is accidentally cut off from the incision. In a scramble to save the babies arm, doctors pull the babies umbilical cord out of the TRASH!  Yes…..out of the TRASH!  Dr. McSteamy and Dr. (Arizona) Robbins successfully reattach the arm by using the umbilical cord and the baby is given a chance at a normal life. This brings up a very important question, why was the cord blood in the trash to begin with?  The simple answer to this question is, that parents weren’t educated about the importance of preserving it.

 I am never surprised, yet always blown away in the abilities of cord blood and stem cells. With cord blood making more and more national TV appearances it is only a matter of time before everyone will know the importance of saving the cord.

Take this so called, “Trash” and turn into your “Treasure”.

Together We CAN Help Save lives,

Natalie Curry

Sep
1

Waiting Room Confessions

Stethoscope

Stethoscope

The Other day I made a list of all of my physicians, as I did this it dawned on me that I have 13 different doctors! I mean I knew that I had a lot, but 13 seems a little extreme, even for me. This leads me to my next point.

As if juggling appointments, maintaining medications and remembering all of your special directions as per your doctors isn’t enough. They insist on making your life as complicated as possible.

1.) You call, then you call at least five more times before you even get your appointment setup.

2.) You realize that the only upcoming appointment they have available for you happens to be on the exact day and time as one or more of your prior commitments.

3.) You get to the doctors office right on time and you assume, oh good I’m on time, it shouldn’t be too long before I’m back to my daily plans. NOPE, wrong, the doctors office has another agenda. They’ve decided that your time means NOTHING and that your world revolves around their schedule. An hour after waiting in the packed, loud, germ infected waiting area , they call your name. You practically leap out of your chair while stumbling over all of your belongings as you gather them up. You follow the nurse lady to another desk where the woman behind asks, “Can you please verify your birthday?”After whispering your birthday to her so no one else hears you, she instructs you to sit in a different waiting area because they need to get some blood. NO ONE told you about this part, they didn’t warn you that you would have to basically undress so the 13 year old lab tech could go on an endless search for a promising vein. For a good ten minutes of vein searching, your hand and arm begin to go numb and turn blue due to the plastic tourniquet that’s pulling and pinching your skin. Oh but wait, the best is yet to come. The 13 year old lab tech then proceeds to stick you with a needle only to find out that your blood has decided to go on strike that day. So she tries a couple more times before finally realizing that she needs to call an advanced  nurse for help. Ten vials of blood, dizziness and six Mickey mouse band aids later you go to ….Yep you guessed it, another waiting area.

By this time it’s been at least two hours and you begin to accept the fact, that your are going to be there all day and that pretty soon you are going to run out of things to read and interesting people to stare at. At the three hour mark they call your name again, but this time you are not enthusiastic and are moving at a glacial pace. You finally make into the room, you know the white, cold, smelly machine filled rooms that make you want to run the opposite direction. The nurse lady hands you a KING size, sheer, feather-lite sheet/robe and instructs you to take EVERYTHING off and put it on. So there you sit shivering being teased and taunted with every foot step in the hall and every time the nurse peeks in to remind you that the doctor is in fact there and should be in, in a few minutes.  We’re not done yet, next they feel it is absolutely necessary to send in a medical student to collect all the medical info for the doctor.  95% of the time these so called “medical students”  end up asking me how to spell my medication, and proceed to ask me the definition of the disease they are treating me for. 

After a day of anticipation the door fly’s open and the doctor appears, suddenly the person you were so eager to see,  becomes the last person in the world you want to see. With a quick look at your chart and a 30 second exam he says, “ok, well everything seems fine, I would like to see you again in six months.”  He gives you your papers and suggests you make your next appointment at the desk on your way out.

At the end of all of this you are left thinking, “Are you kidding me? I waited ALL day to hear you say, come back in six months!!!” A month later you get your mail just to find out that your insurance changed the day of your appointment so subsequently your visit wasn’t covered.

The Bill:

-Ten vials of blood $1,000

-One KING size sheet/robe $100

-Lab fees $1,000

-Hearing your doctor say, “Everything is fine”  PRICELESS

I have had plenty of these experiences in my life! I want everyone to know that even though it can be extremely frustrating, I still appreciate everything all the doctors and their staff have done for me! I wouldn’t be here without the help of these truly amazing people.

Natalie Curry

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