Aug
0

365 Days

Lea Ann Stiller, Matt Farrow and Emily Curry

365 Days

I can’t believe it has been a year ago that we had to say goodbye to “OUR” Natalie.

This past year has been one of change, acceptance, faith, and hope. During this journey, that I thought would be unbearable, I have learned so much. One of the most amazing things was that Natalie had touched so many peoples’ lives in such a short time period. I have been blessed by having the opportunity to meet some of those people in person.

This blog is dedicated to one of those individuals, Matt Farrow. For many of you that will read this, you already know who he is. For those who don’t,  I will attempt to give you a brief glimpse into his life. Matt has Fanconi Anemia, like Natalie did. Matt had a perfect matched sibling, born just a couple of months after Natalie’s match, Emily,  in 1988. Matt had the first umbilical cord blood transplant 11 months prior to Natalie’s in the same hospital in Paris by the same doctor. Matt and Natalie never had the opportunity to meet. She often spoke of Matt and always wanted to meet him. Fortunately, this past year has given me the opportunity to meet Matt. He is as wonderful as I had always envisioned him to be.  Full of love, optimism, and promise!

Prior to Natalie’s death, I made her a promise to never leave the field of umbilical cord blood. I have been given a wonderful opportunity to work for the world’s best cord blood company, CORD:USE Cord Blood Bank. Here, I was reunited with all of the pioneers of the cord blood industry, including the founder, Dr. Hal Broxmeyer,  and also Matt Farrow. The entire team is fabulous and I feel very blessed to be working with them everyday to change, save, and improve lives.

I know there is a very happy Angel watching and smiling from Heaven.

Natalie,

Thank you for showing all of us how to live, love, and laugh… even during the most difficult times.

Love and miss you everyday!

MOM

 

 

 

Aug
1

Can you hear me? Cord blood treats hearing loss!

Imagine not knowing the sound of running water!

Imagine not knowing the sound of running water!

 Today when you walk outside you will likely hear the sound of cars or the sound of people passing by or the sound of the door closing behind you. These are all sounds that you hear and don’t even realize it. But sadly for many people if they heard these sounds they wouldn’t recognize them.  To them these sounds are not real.

My entire life I suffered from hearing loss in both of my ears.  I tried for years to wear hearing aids, but  never had much luck with them.  When  they weren’t falling out they were causing a distracting beeping noise that you could hear across the room. School was difficult because I heard about 50% of what teachers said and understood about 20% of that.  Hearing became a struggle in many aspects of my life. By the time I was three years old I learned how to read peoples lips.  This is a skill that I relied heavily on for the majority of my life.

I had surgery on my right ear when I was 10 years old in hopes of improving my hearing. Sadly the surgery was unsuccessful and the recovery was anything but smooth. Imgaine having a tooth ache and an ear infection that won’t go away and that it is what it felt like.  I was extremely disappointed but did not given up hope that someday something would work.

In 2004 when I was 19 years old, the time had finally arrived.  My doctor surgically placed a tiny screw into my skull behind my right ear.  Three months later I attached a small device called a BAHA to the screw. The BAHA can be easily removed and works for both ears. With the BAHA I have near perfect hearing.

Dad went with me to the Doctors office and he nearly cried when we both realized that the new procedure had worked.  It was one of the most amazing days of my life. I will never forget the feeling I had the first time I actually heard what running water sounded like, or the sound of footsteps and the sound of birds chirping.  I didn’t realize how bad my hearing loss was until I could hear everything.

There are nearly 250 million people world wide who suffer from some form of deafness. Unfortunately there is no cure for deafness. The EXCITING NEWS is that recently scientist have begun research using stem cells to cure deafness.  This research is in the very early stages but has been showing very promising signs!

Just thinking about all of the miracles stem cells can provide gives me chills.  The richest form of stem cells can be found in a babies umbilical cord blood.  There is no reason why people shouldn’t save the cord blood. It is discarded as medical waste and is NOT in any way harmful to the mother or child. By saving it you could be saving a life or giving someone a chance to see or hear.

Next time you hear the sound of a loved ones voice saying “I love you” or you hear your favorite song on the radio, imagine what it would feel like to not hear it.

PLEASE HELP ME spread the word about the importance of cord blood preservation!! You CAN HELP by tweeting on twitter, updating your status on facebook and telling everyone you know!

Together We CAN Help save lives,

Natalie Curry

Image Courtesy of http://www.flickr.com/photos/shutterbri/367973928/

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

Jun
3

What would you do if you found out your child was going to die?

Aticle from Womans Day Magazine, 1991

Article from Womans Day Magazine, 1991

Twenty four years ago my parents were faced with a heart wrenching reality. Doctors told them I was going to die.

Doctors told my parents that my ONLY chance for survival was for them to conceive a perfect match sibling.  But not to bother because:

  • The  chances of that happening were virtualy ZERO.
  • Most importantly,  they didn’t have time to conceive a perfect match because I would die before that even happened.
  • There was a 25% chance that any future children would also have Fanconi Anemia and also die!

Have you ever wanted to do something and had everyone telling you don’t do that, even though in your heart you knew it was the right thing to do?  If so, then you can begin to understand how hard it was for my parents to move forward and try and conceive again for only a SMALL chance at saving my life.

Even after making the decision, they were STILL confronted with HARSH criticism and were told that conceiving a child to save another was morally wrong.  My parents decison to have more children saved my life. They had more children, not because they needed them for spare parts, but because they had LOVE.  My mom has always said that if I would have died she wanted to have peace in her heart knowing that she did everything she could to save me.

Too many people place judgment upon parents who have a child to save another. So to those people: Imagine looking into your child’s eyes and knowing there is a chance they may NOT make it to high school? Can you imagine knowing there was a chance they would NOT be able to fall in love. Can you imagine theres a chance they will not grow up and start a family of their own? Can you imagine the feeling of not knowing what day could be there last?

Is there anything you WOULDN’T do?

Together We CAN Help Save Lives,

Natalie Curry

Jun
2

Interesting Facts on Cord Blood Transplants!

 I feel that cord blood transplants are more associated with children than adults. Today while reading an article about this topic I realized that this is a common misunderstanding.  It is often times more difficult to have success with adult cord blood transplants simply because of the amount of stem cells required. Doctors are now working on ways to increase the amount of stem cells found inside cord blood. This is a HUGE breakthrough! This makes  educational awareness of cord blood preservation even more  important since they can also be used for adult patients.

 A perfect or near perfect match is usually preferred for a Bone marrow transplant. For cord blood transplants however the match doesn’t need to be as close! Which makes finding a cord blood donor easier.  Since stem cells found in cord blood are the newest (youngest) form of  blood cell there are often times less complications. 

Every time a child is born even if they are healthy and have no immediate use for cord blood, it is still so important to store it! You never know who might need it in the future.

Together We CAN Help Save Lives,

Natalie Curry

May
4

Wishful thinking or Destiny?

sweet revenge

Justin, me, Jeff and Mom at Sweet Revenge in NYC.....enjoying amazing cupcakes!

 

 

Earlier this week while I was on my lunch break I read a very touching newspaper article that my dad mailed to me. It was a story about a little girl who suffers from A plastic anemia and is now recovering.  Her wish was to attend the Kentucky Derby and Oaks horse races. Thanks to the Make a Wish Foundation her dreams came true. I was very inspired by her amazing story. I was once again reminded how much I want to help sick children and there families.

I feel like I’m doing what I can, but it’s not enough! I am very confident that my purpose in life is to help others especially children and those going through medical obstacles. Sometimes I get frustrated that I can’t do more, and that I can’t just reach out to all of them and give them hope. I am constantly brainstorming on ways that I can make a widespread impact. Every time I end up with the same answer, a book.  And though I am pursuing that avenue as aggressively as possible I almost feel like there’s something I’m just missing.  Something that I’m so close to I can feel it!

I don’t know……. it’s a hard feeling to describe but it’s deep in my heart. Sometimes I begin to wonder if I am just dreaming too big of dream. It’s hard to tell if it’s just wishful thinking or if it really is my destiny?! One thing is for sure, I will NOT give up!

Together We CAN Help Save Lives,

Natalie Curry

May
1

Nice Note

natalie and Emily

Emily and I on her 21st Birthday

Natalie, I just wanted to tell you directly how much your story inspired and amazed me. And how strong you were at such a young age. And i’m sure you hear that everyday but i truly think your story is amazing.

 What Emily did is one of the coolest things I’ve ever heard. People keep asking me what I’m writing for my paper and I keep telling them about this really cool story about how a little sister saved her older sisters life. It is the craziest story I have ever heard.

Last night when I was checking my Facebook, I was pleased to find the above note in my inbox! It was sent to me by a high school senior who is writing a research paper about Stem Cells. I had a long conversation with her and was very happy to find out how interested she was in stem cells and all the potential that they have.

She is the second person I know this year who has done a project for school about stem cells/cord blood! This makes me very excited to know that more and more people are learning about this topic.

Together We CAN Help Save Lives,

Natalie Curry

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