" There are people who are saying it's too early to do this, but David and Paul and I are adventurers. For people like David and Christopher Reeve, all it takes for them to die is an infection. "
Nanna was born with Optic Nerve Hypoplasia, an underdevelopment of the optic nerve. Her optic nerve never developed more than to give her the most minimal amount of vision. She also has nystagmus, which gives her eyes an uncontrolled motion all the time. Nanna and her family hoped that stem cell treatment might help increase her light perception, reduce her nystagmus and allow other traditional therapies to be more effective. At home when her doctors learned she was going to China for stem cell therapy they told her “she would be better off using the money to travel south to take a nice vacation.”
Treatment in China
Seven injections of adult stem cells via IV and spinal, Chinese medical acupuncture, acupressure and massage.
Condition After Treatment
Nanna came to China anticipating six injections. “Because Nanna was already seeing better after the first injection a seventh injection was ordered,” her mother said. While Nanna experienced pain after every spinal injection she was very upbeat about the whole process telling us “What happens, happens and what doesn’t happen, doesn’t happen!” By Christmas her nystagmus was under greater control.
Her mother updated us with a report stating “Nanna is doing well! She walks a lot better than before and her mobility teacher told us that she walks a lot better when she has to walk down the stairs, and she doesn’t hold on to the banister anymore! She sees the television from further away, but closes up to see perfect. And she sees her friends and the teachers even better now.”
We would like to thank Cameron's mother and grandmother for preparing this Patient Experience for us. If you would like to get in touch with Carol please submit an inquiry to StemCellsChina.com.
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Cameron was treatment was from August 7- August 27, 2007 in Hangzhou
The flights were long and tiresome. Thankfully Wendy had a car pick us up at the airport in Hangzhou, we were then taken to the hospital. When we got off the elevator on the stem cell ward we were greeted by a friendly nurse who immediately took us to our room. The staff at the hospital left us to sleep and recuperate from our long trip until late the following day.
The next day after signing the necessary papers for Cameron's treatment we met the doctors, therapists and nurses while they explained the procedures of Cameron's treatment. After Cameron's blood work we were introduced to Cameron's Acupuncture therapist and his Physical therapist. It has always been difficult for nurses in the U.S., to draw blood from Cameron as his veins are so tiny, the Chinese nurses seem to be exceptionally skilled as they could get the needle in every time with out collapsing his veins.
We were so amazed by the genuine care and compassion of the nurses. The nurses nicknamed Cameron the "Little Prince" (Rylea Barlett had been treated the month before Cameron and they nicknamed her the "Little Princess") Cameron was 18 months old and didn't like strange voices or anyone except Mommy and Daddy touching him, so we were amazed that he would go to the nurses so willingly. Sally quickly became Cameron's favorite nurse, she sang to him with her soft voice while she fed and changed Cameron on a regular basis.
Cameron screamed the first time Martin the therapist gave him acupuncture, after that first time he was fine with the acupuncture. Cameron responded well to Daisy, his Physical therapist.
Cameron had two IV's and two Lumbar punctures. Dr. Mike, Dr. Ma and Dr. Dave were Cameron's physicians. Cameron went to the OR for his Lumbar punctures, he had a sedative and local anesthesia, the procedure took 1 hour. After these procedures Cameron slept very well he didn't seem to have any discomfort. Even after the second lumbar puncture Cameron didn't seem to show signs of any back pain, we gave him some Tylenol just in case.
The morning after Cameron's second Lumbar puncture he woke up around 6:00, as usual. We turned on his Back-Yardigans video and gave him a bottle. Normally Cameron would lay on his back and drink his bottle and fall back asleep, but this morning he sat up in the crib, pulled himself to the end closest to the TV while he sat with his legs between the bars his eyes were fixed on the TV. Cameron sat for at least 10 minutes starring at his favorite cartoon, pre-SCT Cameron would point his ear towards something he heard because he could not see more than a slight shadow one inch in front of his face.
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Condition
Optic Nerve Hypoplasia.
Course of Treatment
Lawrence received 9 Stem Cell Transplants, 4 via IV and 5 via spinal. He also received electric wave therapy and acupuncture.
Reason for Coming for Treatment
Lawrence Brown III was born with Optic Nerve Hypoplasia. The doctors originally told his family that there was no treatment available for ONH. Lawrence had limited light perception and was able to see colors. However, he was not able to distinguish shapes or any detail.
He used several tools to help aid his vision such as JAWS, a talking computer program, and a cane. He was unable to read print letters, and learned to read Braille. Lawrence can read English, Spanish, and French Braille.
Lawrence was very successful in his every day life, but his family felt that any treatment available to help give him more independence was worth a try.
Condition After the Treatment
While Lawrence was receiving treatment in the hospital, he began to notice several changes to his vision. He noticed that light seemed much brighter to him, and colors appeared much more vivid. He was able to distinguish objects when walking outside, like flowers or written Chinese characters on walls. The nystagmus of his eyes decreased significantly.
He began to see the movement of people and objects instead of just feeling it. This often caused him to become dizzy and uncomfortable.
During his stay, Lawrence was able to see and recognize extremely large print letters for the first time in his life. He was able to find objects he had dropped on the floor.
After returning home, Lawrence noticed that he was able to see shadows at night. People's facial features became clearer. He was able to pick up a dropped object on the floor without searching for it with his hands.
Lawrence was able to march out with his marching band for short distances without having anyone help him. Maneuvering through streets and crowded sidewalks became easier for him. Lawrence learned to read the print alphabet at 400 font. He stopped using his cane while at school.
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Medical History
Jenna was born with Septo-Optic Dysplasia, a congenital disease characterized by an underdeveloped septum and optic nerve which often causes vision impairment and hormonal imbalances. In Jenna's case, she has to take growth hormone every day and she has minimal visual perception, only being able to differentiate between light and dark. Jenna's doctors in the USA could offer no treatments for her visual impairment, her mom, Lisa, explains how they decided to come to China,
"We just happened to be watching the news one night, and another couple that was here in Minnesota was raising funds for their child who was 5 and had the same eye condition that Jenna did. And they were on on the news, they were raising money to go to china. So I researched it for about a year and then I contacted Beike.
"I did my research quite well before I even would have considered it. I never wanted Jenna to be any kind of experiment what so ever and I had to have legitimate proof to me that this was going to be something that was going to help her."
Treatment in China
Jenna received 6 umbilical cord blood stem cell injections. She also received physical therapy, occupational therapy, electric wave therapy, and acupuncture.
Condition after Treatment
Jenna began seeing changes in her vision while she was in China. Her mom describes how she noticed improvements while talking with Jenna over Skype,
"I could see visual changes in Jenna. I could see her eyes holding steadier just while talking to her using Skype."
More changes were awaiting Lisa after Jenna came home,
"But when she got home the biggest thing that we noticed was that when she would walk, how fast her pace had picked up, what a straight line she could do instead of looking like a bumper ball. Even with her cane, she used to bounce off stuff and now she walks straighter.
"And dressing, It used to take 10 to 15 minutes for her to get dressed during the day. A shower would take 20-25. After she came back her getting dressed was down to 5 to 10 minutes. Even for a swimsuit to go swimming it was 5 to 10 minutes, and she is done flat out the door."
We went to the mall and we were walking along with her and all of a sudden she would say, "I want to go into this store". And she would turn right into the store. She could never do that before because she didn't know that the entry was there!"
Lisa has this advice for any other parents thinking of bringing their children to China for stem cell treatment,
"Every parent has to make the choice for their child. But there isn't anything more rewarding than the first time your child says, "Oh, I can see you" or "Oh gosh, that's what that looks like.
"So if you are seriously thinking about it, and you seriously think it it is something you can give your child. I recommend it 100%."
