Hello and Thank you for taking the time to inquire my request for my daughter's possible sight. My plea is simple, from a mother's heart. My only child was born 3 years ago blind due to ONH or optic-nerve hypo-plasia. In other words, her eyes are fine and fully functional, however, her optic nerves were not fully developed in utero. Where as you and I have a bundle of nerves around, say 2 million, Nyana only has 1/3 or less nerves. That amount is not strong enough to send the image from the eye to the brain successfully. I was told that there is no cure for Nyana's condition (It is stated in the US Medical Journal of Medicine) and other than her eye muscle's strengthening with time, she will remain blind in both eyes the rest of her life. As a mother that was very hard to cope with, especially knowing that her eyes themselves had a fighting chance, just no way to get the image to the brain right! I did a lot of investigating online and came across a group of other parents in the same situation as myself, trying to find alternative cures, and basically not taking "NO" for an acceptable answer to help their child to see like you and I. What I came across was remarkable! Beike Biotech Hospitals in China have been doing CBC injections or (cord-blood stem cell) injections into the spinal cavity and it is having remarkable effects! So far to date over 40 people and counting have had CBC injections with Nyana's condition (ONH), and have gained vision!! That is amazing! You see, cord blood stem cells come from the umbilical cord of a baby that was just born. Doctors and scientists have found out that this "cord blood" is rich in stem cells and is literally a  stem cell "gold mine"!! If you know someone or have recently had a child yourself in the past 5 years, you have probably came across an advertisement to "Store your child's cord blood"...the ultimate reason behind freezing your child's umbilical cord blood, for possible stem cell use in the future in case of any medical reasons your child may encounter! It sounds amazing and it is very expensive to do so. The problem in the US is simply this: the Government is still in "testing" fases for any stem cell injection therapies regarding CBC's and so it is still "illegal" to perform or not allowed in the states. Due to the previous controvesy over (embryotic stem cells, or fetal stem cells) or stem cells in general, this legal testing will probably be many many years before we see any type of even clinical trials let alone standard hospital procedures available. That is very unfortunate, considering that in China, CBC injections have been in clinical stages for over 10 years, and is now being accepted in the "patient trials" stages since 2006! That is where my daughter's chance at vision comes into the picture. Because it is being performed over seas, legally, no US insurance company can provide coverage on an operation that is not being performed here legally in the US. So that is where the cost comes into effect. The CBC injections are set up into 4 weekly injections of millions at a time. That means that Nyana & I will have to remain in the hospital in China for approximately a month's time. The total cost for the 4 injections, hospital stay for her & I (*I will have a dorm-style room in a wing close to her with other parents) and all medical costs will be around $25,000- $40,000. The cost for airfare to China will be roughly $6000+ roundtrip for 2 tickets. Then when we return from China, Nyana is recommended to have hyperbaric chamber treatments weekly. These are very expensive and roughly costing $20,000 a year! (the hyperbaric chamber will help bring oxygen levels into the stem cells to increase their growth and effectiveness to achieve maximum results.)
I will be off of work while in China and after to help Nyana with her daily activities. (I am single mother with only one tiny income, to mention!)

Considering how costly this all is, and how it is ellegal in the states due to previous controversy, setting that all aside...as a mother, how could I not want to do the most I can for my child and try at a chance for sight she so duefully deserves, when she currently lives in a world of darkness???!!!

So thank you very much for taking the time to understand more from a mother's point of view and why this stem cell surgery is so important to Nyana, myself and our family! Nyana deserves to see like you and I and atleast a shot at the chance!

Thank you & God Bless!!

The Hage family thanks you in advance for ANY support towards a chance for little Nyana’s VISION!  GOD BLESS YOU!

 A note from Nyana's mother ~ 

Thank you for taking the time to visit Nyana's website. Nyana is my only child, and I am a single mother. I have never felt so loved as when I see the smile on my daughter's face after she hears my voice. I realized just recently, that perhaps the fact that I have chosen to finish school with a photography degree, is more than just an accomplishment for me. Call it silly, but maybe subconsiously I want to be able to capture moments in time, that later in life I can share with Nyana so that she can experience the joy I have from vision.

 I dont like asking for help from anyone, and it was hard for me to grasp the fact that I alone can not provide the means to possibly bring sight to my daughter's eyes. It means more to me than you know, that with everyone's help love & understanding... Nyana is going to get the chance to lead a life filled with the wonders & blessings of vision! Nyana has a beautiful soul, & she deserves to see the beauty in the world around her!

Thank you from the bottom of my heart!   ~ Kara Hage

MY CONTACT INFO:

nyanasmomma@yahoo.com

DONATE: To The Nyana Patricia Hage BENEFIT FUND!

LINKS: to others' Stories of success with Stem Cells!

A"Vision" for VISION!