Apr
5

A New Definition for Fanconi Anemia

FA Day Ribbon

FA Day Ribbon

It was 80 years ago when Fnaconi Anemia (FA) was first identified by swiss pediatrician Guido Fanconi. Now for the first time FA  will be receiving it’s prolonged recognition.  May 1st has been declared international FA day.  My passion for FA stems from my personal and life long battle with the fatal disease.  I am one of the lucky ones. However  so many people  aren’t as fortunate as I am.  Many cases  go undiagnosed or result in death, due to the lack of knowledge about the disease.

Although FA has provided me with physical challenges , it has shaped my attitude toward life in a positive way.   My experiences have showed me that living with FA is not as scary as the definition….

Definition of FA- One of the inherited recessive anemias that leads to bone marrow failure. Though considered primarily a blood disease, it can affect all systems of the body. Many patients eventually develop acute myeloid leukemia (AML) and at a very early age.  Without treatment most people die before the age of 10.

My definition- Survivor,  surpassing peoples expectations and living my dreams, while refusing to be a statistic.

It is my hope that FA day will bring much needed attention to this devastating disease.  Please help by donating this cause- http://www.razoo.com/story/International-Fanconi-Anemia-Day-Supporter-Friends-And-Family-Challenge

Together We Can Help Save Lives,

Natalie Curry

Jan
1

Education is the Key

Save A Life, Save The Cord

Save A Life, Save The Cord

My story begins when I was diagnosed at 1 year old with Fanconi’s Anemia, a rare fatal blood disorder. Without a matching donor for a bone marrow transplant, I would likely be dead before my 10th birthday. However, my parents would not accept this fate for me, and conceived two children, in the hopes that the bone marrow of a sibling would be a suitable match. On their second try they conceived my younger sister Emily, she was a perfect match and my hope for survival. About six months into the pregnancy mom went into pre-term labor. The fate of my future and Emily’s was in grave danger, doctors placed her on strict bed rest for the duration of her pregnancy. Now mom not only had the fear of loosing me but the fear of loosing Emily as well. Determined to be as prepared as possible mom spent most of her time on bed rest educating herself about my disease, what to expect as a new mom, and most importantly what events took place in the delivery room.

After reading about umbilical cords, she was left asking ,”what do they do with the cord after they clamp it?” She immediately contacted my doctors to find out if the blood found inside the umbilical cord could help treat my disease? At the time,this procedure had never been performed before. The doctors response was ” who told you about this” Once they were in agreement that saving Emily’s cord blood to use for my transplant, may in fact be better than Emily’s bone marrow, my parents and doctors began making preparations to save Emily’s cord blood at the time of her birth. Emily was born through a scheduled c-section, doctors from all around the US came to witness what would soon save my life and change the medical field forever. Emily’s cord blood was the first to be collected and made medical history! Not only was he transplant was a HUGE success, but it has helped to pave the way for thousands and thousands of cord blood transplants. While you are pregnant it is VERY important that you educate yourself about all of the important decisions you will need to make. Saving cord blood is a ONCE in a lifetime opportunity, but can give you peace of mind FOREVER!

-Please feel free to contact me with any questions you have regarding cord blood!

Together We Can Help Save Lives,

Natalie Curry

Jul
1

How YOU can HELP save lives!

As you may,or may not know, I am writing a book about my families medical journey’s and how Cord Blood saved my life.  I feel like I have been given a second and third chance at life so that I can make a difference.  I believe that I can make my biggest contribution by telling my story.  It is with a burning, strong and unwavering passion that I want to help others over come their obstacles and provide them with inspiration.

But I need YOUR HELP!

 I need to raise at least $5,000 to get started. You can help by clicking on the blue box titled “book donations” on the right side of my homepage. Every dollar helps, and donors can remain anonymous if they choose. A portion of the book profits will be donated to organizations raising awareness in the importance of cord blood preservation.

NO ONE should have to suffer due to lack of knowledge about this incredible life saving resource. Together we CAN help save lives!

Thank you for your support!!

Natalie Curry

Jul
Jul
0

“The Dull Razor”

Over the last couple of months, I have been writing  a book about my families couragous medical journeys and how cord blood saved my life.  Now  I have something very exciting that I’d like to share with you.  The following is part of one of the many stories that will be in the book!

-The Shaving Day-

 ……………One afternoon while grandma was with me, a nurse came into my laminair flow room holding only a sterile but dull razor.  She had come to shave  all of my hair off.  I remember sitting in the middle of my hospital  bed with tears rolling down my face while grandma held on to me tight. I wasn’t afraid or sad, I was in pain. My scalp began to feel like it was on fire! As grandma watched pieces of my dark hair hit the ground she felt sorrow in that she couldn’t ease the pain it was causing. The burning presisted long after all of my hair was gone.  A few days prior I had received a low dose of Chemo therapy to treat the bad cells in my blood.  In an effort to prevent  having  my hair gradually fall out,  the nurses felt it best to shave it off.

When Dad arrived at the hospital later and noticed what had happened, he was extremely angry! He was upset that no one had infomed him they were going to shave my head.  Not only that, but he was even more furious that they didn’t use any shaving cream or water.  He confronted the nursing and staff and as he says ”They understood all of my AMERICAN curse words!” In the days following the shaving I developed a rash on my head.  Dad says I looked just as cute with a bald head.  But that seeing it reinforced that everything was really happening.  He wanted me to have a normal childhood and knew that he had to keep a positive attitude and that one day I would………………

 More of this story and many others can be found in the completed book.

July is Cord Blood Awareness month. Together we can help save lives! You can help by tweeting on titter, updating your status on facebook and spreading the word to everyone you know!

Your opinions are very important to me.  I welcome you to share your thoughts!  This is just part of my story! I am working on writing my book now and hope to be finished within the next few months.

Together We CAN Help Save Lives,

Natalie Curry

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