" She definitely has developed color perception. She’s been able to identify five different colors with a little confusion of red, orange, and yellow. "
Macie was diagnosed with Optic Nerve Hypoplasia shortly after being born.
Condition Prior to Treatment
Macie grew up legally blind never realizing the fully extent of her visual impairment.
Macie told us “my whole life I'd never been told that I was blind. Just that I couldn't see like everybody else."
When Macie wanted to get her driver's license her mother finally had to tell her she would not be able to drive.
Her mother Rochelle told us “but instead of telling her 'There's no hope at all,' every four months I would get on the Internet and I would look for something: some kind of cure, some kind of treatment for ONH."
Treatment in China
Macie received adult stem cell treatment in the Summer of 2008. After positive results, she returned in the Spring of 2010 for a second round of stem cell treatments. During her second treatment, she received six umbilical cord stem cell packets injected via IV and lumbar puncture.
Condition Following Treatment
During Macie's first treatment in 2008, she began to see improvements in her vision. Macie's nystagmus decreased.
Macie's mother Rochelle noted that “after Macie's third treatment, she went from being able to read 2 inches from her face to… being able to read like an extra 12-16 inches."
Macie was able to look people in the eye. She was able to distinguish people's faces and the color of their eyes.
When talking about the changes after her first treatment, Macie told us “it’s a whole new world. That's the only way I can explain it. It's a whole new world."
During Macie's second treatment in 2010, she primarily noticed changes in her left eye.
Macie said her “peripheral vision is much bigger in my left eye. It's really weird for me right now, because yesterday I put on sunglasses and I could see through that lens and I've never been able to do that before."
Macie also said “a couple days ago… I could see about eight feet further away, instead of three."
She described her new vision to her mother as "like looking at a snap shot photo…. or you have your panoramic picture that's very long and spread out… that's what I'm seeing now. It's like another window opened."
Born with Septo Optic Displasia, a congenital condition that causes a hormone deficiency and mobility problems, Izabelle Evans, 4, was blind since birth. But the little girl can now see up to three feet in front of her after undergoing stem cell treatment in China.
Because of the condition, Izabelle only had a few hundred optic nerves connecting her eyes to her brain, whereas most people have millions.
Izabelle's parents, James Evans and Hollie McHugh, both 24, from Hayling Island, Hampshire, England, tell London's Daily Mail nothing could top the moment when their daughter looked into their eyes for the first time and said "Mommy" and "Daddy."
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Age 40, USA
We'd like to thank Shanan for preparing this Patient Experience text for us.
Condition
I was born with underdeveloped Optic Nerves that were also slightly deformed. The diagnosis is Optic Nerve Hypoplasia with very mild Septo-Optic Dysplasia (SOD) however no affects of the SOD have ever been present. Before going to China I had a little light perception in my right eye and 20/2400 vision in my left eye.
Reason for Coming for Treatment
I am 40 years old and the mother of two young children. I live a very full life of working, volunteering in my children's classrooms and activities, reading, bike riding, running and generally raising my family as any sighted mother would do, but anybody with a visual impairment knows that it takes a lot of work. I went to China with the hope of making my life a bit more simple and enjoyable. While I would love to drive a car or wave at my children across the playground, I knew that probably wouldn't happen after returning from China. My hope was to be able to tell the meat was done without having to stick my hand in the frying pan or help my children with homework without having to use more than one magnifying glass.
Treatment in China
I traveled to China in September of 2009 with my Mother and seven year old daughter and received nine umbilical cord blood stem cell treatments over a period of 35 days. Five of my treatments were given intravenously and four were spinal injections. I also worked twice a day five days a week with Forrest, who was an amazing therapist to do Acupuncture, Electro wave therapy, Massage, Ear Point therapy and Fire Cupping. I thoroughly enjoyed the opportunity to learn about Traditional Chinese Medicine.
Condition After Treatment
Within a week of two treatments my eyes began to track better. The first eye exam showed that I could see the chart at 120 cm and after one week I could definitely see the eye chart better. After two weeks I could see the eye chart from 162 cm and I could read some icons on our laptop computer that I could not see when we arrived. Over the rest of our stay, my eyes continued to track better and when we left I could see the chart from 200 cm. The distance had almost doubled. We were thrilled!
Condition Today
I have been home now for over three months and my vision continues to improve slowly. A few short weeks after returning home I went to a football game and could see the time clock. We always sit in the same seats and I could never see that before so I knew that was a change. We were very excited! A major change is that my eyes constrict normally now. Before going to China, I couldn't go from sunlight to a dark room and find my way. One day we went to a dark restaurant in which I have never been able to maneuver and I was able to find my way with no help. That is a wonderful improvement that many may take for granted unless they have been in the difficult situation of not being able to find their way.
After Christmas I pulled out a manual that I previously read with a monocular and a magnifying glass and was pleasantly surprised to find I no longer needed the magnifying glass. I could read it easily with just the monocular.
We have a beautiful mountain range where I live and have lived my entire life. Since the snow has fallen this year, I am always amazed when I see how beautiful they look. At first, I kept asking my husband why he thought they looked so amazing. It took me the better part of a day to realized that it was the improvement from the stem cells. Now I am surprised every time we drive into the city nearby to see how rugged and huge they look.
In general things do seem a bit easier for me. I chopped apples the other day without bending over the counter and I seem to recognize people easier. My trip to China was incredible for me as well as my Mom and Daughter. We have no regrets in our choices and wish the best to all those who choose to go.
Tyler was diagnosed with Optic Nerve Hypoplasia three months after his birth when his parents noticed he was not tracking objects.
Condition Prior to Treatment
Tyler had no depth perception. He had very little vision in his left eye, and only light perception in his right eye. His visual acuity was about 20/600 to 20/1200. Tyler traveled with a cane when he was in unfamiliar places.
Treatment Received in China
While in China, Tyler received seven adult stem cell transplants, five via IV and two via spinal.
Condition Following Treatment
While Tyler was in China, he noticed that he began to see more details and textures. He said that he could see more specks on the bathroom counter. Before he may have only been able to see two or three, while in China he noticed he could see twenty or thirty specs. Tyler is better able to navigate new spaces independently.
Tyler's Ophthalmologist tested his eyes before and after he went to China. After returning from China, his Ophthalmologist noted that his optic nerve looked healthier. The left optic nerve had grown by about forty percent, and the right optic nerve had grown by about fifteen percent. The optic photos showed that he had increased blood flow and the color was much pinker rather than gray.
