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Lauren
05-24-2013, 08:13 PM
Hello,
I am new to this forum and I'm glad that I have found it. There seems to be a wealth of information on stem cells here. I'll give a short version of why stem cells matter to me and my family. My son was born blind in 2010 with Optic Nerve Hypoplasia. He was born totally blind and because so, he was developmentally delayed. The doctor told us there was nothing we could do except get early intervention services to help him live in the sighted world, without vision. I had a very hard time just accepting that there wasn't anything I could do for him. The doctor warned me not to search too much online or read into stem cells. He said nothing could be done for my son and there wasn't anything I could give him to help his vision. So naturally, I got on google and started researching ONH and eventually I did come across stem cell treatments. ONH patients were gaining vision overseas, in China. We decided to give it a try. We felt through our research and from other testimonials that it could not hurt to try. Well, before we left for China, we did a VEP test on our 18 month old. The results came back that our son was completely blind without a visual pathway from either retina back to his visual cortex. This is what we expected because he lacked the spirit our daughter had and he could barely lift his head at 18 months- clearly he wasn't seeing anything. After we gave him MSC stem cells through IV, we came home. We had him retested with the VEP. We didn't hear from our doctor about the results so we figured there was no vision there. After not hearing from our optho, we decided to change our sons doctor to the neuro-optho who performed his VEP tests. When we arrived in her office, it was year post stem cell treatment. Months after his follow up VEP. She came into the room and said, wow, so Lane (our son), has some light perception now! My husband and I looked at each other like, WHAT?? She went on to say that our son now has a visual pathway from both retineas back to his visual cortex. The test results were significantly different! He could now see out of BOTH eyes! We immediately began working with a VI teacher to work with the new vision that he had. We thought over that year that he was noticing light but we were not sure. Looking back, I'm certain he gained that light perception shortly after stem cells were given to him. Other than vision, we immediately saw progress in Lane's development after stem cells. Within three weeks, he was crawling, holding his own bottles, trying to talk, he was playful- he was a new kid! He sees not just lights, but colors and even grabs objects off the light box. We don't know what exactly happened, but the results were very encouraging. We are currently fundraising again for another round of stem cell treatment. We know some US doctors think that we should wait, but our son is young now. We know it doesn't hurt him, so we are fighting for his sight. Where would we be today if we had listened to his first doctor? I cannot just sit still and give up hope. We are currently looking into maybe using his own stem cells this time. I've been searching and searching for US doctors who want to do stem cell research for ONH. I found a Dr. Kang Zhang that was interested but there is no trial as of today. I'd gladly raise money to fund research for ONH and stem cells here in the states. If anyone has any info on ONH and stem cells, please pass it along to me. Also, any advise as to what stem cells you think are best for nerves etc, I'd love to hear your input.

Lauren

barbara
05-25-2013, 12:27 AM
Lauren - Welcome to the forum. Your story is typical as far as being told to wait. Wait for what is my reply when you know there are treatment options out there.

I attended a meeting a few years ago with several parents whose children had ONH. They had all been treated at Beike and the results were impressive.

There are some groups here in the U.S. who have opted to fund their own clinical trials. One is for CP and the other is for Parkinson's. Is Dr. Kang Zhang practicing in the U.S.? Would he be willing to help you?

Here's the info on the two patient funded trials:

http://www.stemcellpioneers.com/showthread.php?t=6636

http://www.stemcellpioneers.com/showthread.php?t=6774&highlight=parkinsons

I am not a doctor nor a researcher, so I will refer your question as to what stem cells are best for nerves to our host of Ask the Doctor for June. His replies should be posted online sometime after the middle of the month. If you have any other questions for him, please send them to me.
Host for June is Alex Moffett, Chairman & CEO for SiriCell Technologies, Inc.

Lauren
05-25-2013, 12:52 AM
I've spoken to Dr. Zhang's assistant and put a word in but haven't gotten a call back. He is San Diego and I am in Texas. What can I do to get the ball rolling? I'm going to approach our neuro-optho and see if she can help. She doesn't know anything about stem cells so I'm sort of lost as to where to turn. ?

barbara
05-25-2013, 02:48 PM
I don't know that you will get much support from someone who doesn't know anything about stem cells. I would continue to try to get in touch with Dr. Zhang. Perhaps, he knows of others in the field who are in Texas. This is going to take some persistence. Are their other parents who might be willing to join you in your efforts? It's a herculean effort for one person I can assure you.

barbara
05-27-2013, 01:53 PM
I should add to be very cautious. My husband and I spent a lot of money financing what we were led to believe were valid studies. Unfortunately, they weren't. It was truly a life lesson that I would not wish on anyone.

Lauren
05-27-2013, 05:22 PM
Oh Barbara, I'm so sorry to hear that. I will keep that in mind. Thank you so much. I will let you know how far I get down the road. Best of luck to you!