Lora, Justin's mother, says, "We noticed at about 2 or 3 months he wasn't making eye contact with us, or following toys."
Not long after Justin was born, parents Lora and Jason discovered that the nerves connecting his eyes to his brain just hadn't developed.
Every doctor they took Justin to said the same thing - he was nearly blind.
Lora recalls their words, "All the doctors have said there's no treatment. You just have to wait and see."
But while searching the internet for toys for Justin, Lora stumbled onto companies offering stem cell treatments - cells from umbilical cord blood that the companies claimed might give Justin sight.
The treatments were being offered in Mexico, Bermuda, and Mexico.
After a lot of research, the couple decided on treatments in Hangzhou, China, with Beike Biotech, the same company recently profiled on ABC's Nightline.
The company claims that with 2-thousand patients since 2005, it's had an 85 per cent improvement rate in conditions ranging from spinal cord injuries to autism.
Lora admits China is a "world away," but says, "we feel so comfortable with it. We know it's the right choice for him."
For the 9-month-old, treatment means 4 infusions of cord blood cells - 3 into his bloodstream, 1 into his spine.
Even without examining Justin, the doctors were optimistic his optic nerves would grow.
Lora says, "Based on other children, he's expected to have some sort of vision. He's the youngest child to ever have this done, so this outlook is even better."
Americans with ailments ranging from spinal cord injuries, cerebral palsy, to degenerative disorders such as Parkinson's disease. Beike and former patients post impressive accounts online of seizure patients who suddenly become relaxed, or children who apparently can see now.
The treatments cost $30,000-$50,000. Insurance does not pay for any of it,, and the money must all be raised before the patients arrive in China. Lora and Jason got the help of fundraising events and donations from their South Jersey community. "We've had bake sales, mum sales, spaghetti dinners. Our community came together, and treated Justin like their own child. The community has been great, and I can't say enough."
After a grueling flight, the Salem County family arrived in China around Valentine's Day.
He was examined and tested before treatments began. Just 24 hours after his first infusion, Justin's family reported on its internet blog that his vision seemed better, that his eyes followed moving objects.
In January, Action News reported on the Anthony family in Warrington, Pennsylvania, headed to China for their 5-year-old son Curtis, who has Batten disease, going blind,and no longer able to walk or speak.
One of his parents remembers, "He used to say, I love you. Then it just stopped."
There are different types of stem cells, and they differ in what they can become.
These are not the embryonic stem cells which have sparked so much controversy. It's believed that embryonic cells can be transformed into almost any type of cell in the human body. What's used in China are hematopoeic stem cells, adult stem cells from umbilical cord blood. Those have a much more limited range, to treat leukemia, and treat some autoimmune diseases. Doctors have used them for decades.
American stem cell experts tell Action News that cord blood contains a very small number of specialized stem cells, which might be converted to nerve cells. However, these researchers say the science just doesn't exist yet to make these conversions.
Nonetheless, there are anecdotal reports of people who regain some skills after cord blood stem cell treatments overseas.
Margaret Keller, Ph.D., of the Coriell Institute for Medical Research, in Camden, New Jersey, has been working with both types of cord blood stem cells. Dr. Keller says knowledge on its potentials, and drawbacks is still being discovered. "How to isolate this cell, and what its properties are is still in the very early stages."
Dr. Keller says cord blood only contains a few of the more specialized cells - "They can become bone cells, they can become bone cartlage, they can become heart muscle, if they are coaxed." She says work done thus far indicates they need to be expanded, or grown in the laboratory.
Dr. Keller doesn't believe the stem cells themselves can make a difference. Instead, she offers another possible explanation for the improvement some patients going to China have reported. "This type of stem cell may actually be working simply to coax the body to heal itself."
Action News will continue to follow these cases, and the stem cell treatments in China.
