If you have found this page, you are already familiar with what ONH (Optic Nerve Hypoplasia) and SOD (Septic Optic Dysplasia) are. ONH (Optic Nerve Hypoplasia) and SOD (Septic Optic Dysplasia) have been estimated to occur in about 1 out of 10,000 births. (Source).

Contrary to what physicians may tell parents when they are first diagnosed with ONH (Optic Nerve Hypoplasia) or SOD (Septic Optic Dysplasia), many patients born completely blind do experience some improvement in vision over time. It is not uncommon for patients’ vision to go from bare light perception to seeing very large objects. However, many parents have wanted more for their children and have gone to China for umbilical cord stem cell treatments.

Rylea Bartlett pioneered travel to China to be treated for ONH (optic nerve hypoplasia) thanks to the efforts of her mother, Dawn, who made the inaugural trip in July of 2007. As of today (November 11th,2008) forty-nine other patients with optic nerve related diseases have traveled to China for treatment with Beike Biotech’s umbilical cord stem cells following in Rylea’s footsteps. Following animal studies, Beike began treating patients with the same type of umbilical cord stem cells in 2001 with over 2,000 by that time. While the outcome was not certain, the safety-data was robust enough for Dawn to feel comfortable. Rylea’s case was striking because she was, according to both Dawn and her eye doctor, completely blind with no light perception before treatment at age 5.

Dawn recently stated that she felt Rylea’s vision kept improving for eight months. During that time her doctor stated that her vision improved from no light perception to 20/400. You can see Rylea’s blog.

The next patient with ONH (optic nerve hypoplasia) to get treatment was Jackson Blackford who went in October of 2008. Jackson was only one years old when he got the treatment and his parents claimed that he had no light perception before the treatment. See Article.

“He’s doing really great. We think that his vision is definitely getting better. I’m pleasantly surprised he’s got this much light perception this quickly,” Stayer said. “When we took him to his eye doctor a month ago, he was surprised his light perception was as good as it was.”

Other patients followed. Hunter Burden, 2 years old, was treated with umbilical cord stem cells in January of 2008 (See Blog). His mother stated in May:

“Hunter had pictures taken of his optic nerve post-treatment on April 25. The first pictures of his optic nerves taken in December before stem cell treatments revealed that his nerves are white and small. But the most recent pictures showed thicker veins surrounding the nerve that is giving the optic nerve a richer blood supply and better circulation.”

After Hunter, Lydia came, older (seven years old) with SOD (Septic Optic Dysplasia) as well as ONH (Optic Nerve Hypoplasia). Lydia’s parents stated on their blog that she went from having painful light perception when a light was shined in her eyes before her treatment in January of 2008 to being able to see and follow animals at a zoo in August of 2008.

A local newspaper article in Missouri stated:

“Before treatment, Lydia could not see anything. She only had a small amount of light perception. Lydia was so light-sensitive that she had to wear sunglasses every time she went outside.Since the treatment, Lydia recently has started to see silhouettes and can go outside without sunglasses. During a recent test involving two balls of different colors, she was able to tell that they were different colors, though she could not tell what colors they were.”

Many more patients came for treatment and interest in the west was intense. Beike cooperated with the University of Florida with third-party examinations of three ONH patients. Based on what the University of Florida’s doctors found during those examinations, they decided to start a program to perform the necessary studies to bring the treatment to the United States with pre-clinical (animal) studies to start in 2009. They received a grant from the grandfather of an ONH patient but the challenge of navigating the US stem cell battleground has since halted the progress. With their efforts, the treatment may have been available in the US in five to ten years but it could be longer now.

As you can imagine, not all interest from the west has been positive. There have been western doctors who have told their patients to be wary of the treatment - though it does not seem to stop many of them.

Patients continue to go to China for treatment for ONH because the ones that do are comforted by the following:

• Beike Biotechnology stem cells have been used to treat over 6,000 patients in thirty Chinese hospitals since 2001 with multiple injections of the same umbilical cord stem cells that Rylea Bartlett had.

• The ONH patients’ families have developed a network and are willing to share their experiences with patients investigating the treatment. You should feel free to join many of them in discussion at their YAHOO group.

• The company has performed the necessary safety studies, both in animals and humans, and have over 100 publications in Chinese journals.

Doctors, researchers and families seem to feel that the earlier a patient receives treatment the better the results. The treatment is not a miracle cure. Receiving stem cells is no different than receiving any other kind of medical treatment. Some patients or the parents of the patients have stated they felt there were no improvements from the treatment. Josh, who is just starting to attend college and is completely blind, (See Blog) has not noticed improvement in his sight. Devin, who is also reaching her twenties (See Blog), stated that she is focusing better and her eyes don’t shake as much anymore—but felt no improvement in her vision.

This, however, does not mean that all older ONH patients cannot see improvement. Shanan Brackus who is 39 stated in her blog that she felt improvement in her field of vision and posted the tests to show it. Macie Morse, 15 with limited vision, who attributed the treatment to enable her to get her driver's permit, also stated the following in her blog.

“I have greatly improved vision wise as well. Mom and I were driving home from school and normally I couldn't see the signs until about 10 feet away and I very rarely did I read it now, I can see the signs from over 100 feet away and can reed the signs about 10 feet away most of the time. Mom has me practicing on reading the signs it's amazing!”

Other Links of Interest

You can find a lot of other information for both (ONH) Optic Nerve Hypoplasia and (SOD) Septic Optic Dysplasia on this web site. Here are some specific items:

Patient Experiences: Justin, Claire, Manuela, Giulia and Megan Traynor,

And blogs:
Brayden’s SOD Blog, Justin’s ONH Blog and Rylea’s ONH Blog.

What’s next?

If you are interested in learning more about the treatment for ONH, you can send an email to This e-mail address is being protected from spambots. You need JavaScript enabled to view it or click on the ‘contact us’ link on the menu above and we will make sure your enquiry gets to a Beike Biotech patient representative.