Source: NGNN

It would have been a normal question for a 12-year-old boy riding in the car with his dad. He was at that precarious age near the end of boyhood when rites of passage loom, and Braden Hart knew that he was only three years from being old enough to get a learner’s permit to drive.  And so he asked his dad if he’d be able to drive one day.

Braden’s dad, Brad Hart, could not lie to his son--the son that he loved endlessly, the son who had been diagnosed with optic nerve hypoplasia as an infant, the son who’d been told that while his sight wouldn’t get any worse, it would never be good enough for driving.

And so Brad Hart swallowed the pain lingering with the question, kept his foot on the pedal, and told his son that no, he wouldn’t be able to drive.

But Brad was wrong.

Brad Hart did not yet know about the possibility of stem cell injections in a faraway China hospital or the possibility of a small town coming together to help give his son sight. Those things might have seemed like false hope on this car ride, with Braden asking about the possibility of driving.

The first one to notice Braden’s eye problems in 1995 was his grandmother, who saw the infant’s eyes moving too quickly back and forth. Brad took young Braden to the Anheuser-Busch Eye Institute in St. Louis, where doctors told Brad that there was nothing that could be done for Braden’s blindness. If normal vision is 20/20, the vision in Braden’s right eye was about 20/400. His left eye barely picked up any light.

To complicate things, Braden was also diagnosed with Septo Optic Plasia in 2004. The condition affects his pituitary and would limit his growth if not for the daily shots of HGH that Braden has taken since his diagnosis.

Hope for the Harts first came in 2007 when Brad learned of a Missouri girl with the same condition as Braden who had gone to China for an experimental stem cell procedure. Brad immediately phoned the girl’s mother and soon began raising funds to try and pay for the procedure and trip to China.

It wasn’t as if the choice were easy. The stem cell procedure was not allowed in the U.S. because of the George W. Bush administration’s blanket ban against stem cell research. The Harts would have to go to a foreign country with inferior hospitals. Costa Rica and Taiwan were options, but China was the only one with a price tag within the Hart’s imaginable reach.

And, there was the stem cell issue. The procedure in China used stem cells from umbilical cords, not the embryonic stem cells at the heart of America’s moral struggles. But Hart was prepared that everyone might not understand the distinction, and many might have branded the procedure as a moral wrong. Brad figured that he’d face resistance from his own brother, a devout Catholic. But the brother surprised him, telling that that he’d the same exact thing if he were in Brad’s position.

But beyond the cost, and beyond the political baggage hauled by stem cell medicine, Brad worried for his son. He would do anything—even sell the house, he said—if it could give Braden a chance to see.

“With me, I was never on the fence,” Brad said. “I said, ‘Who do I talk to, how much is it going to cost and when do we leave?’”

The stem cells to be used for Braden’s injections were provided by Beike Biotech, which is based near Hong Kong. The cost of the trip would be around $35,000, and the Harts would be required to stay for 30 days. The thought of flying to such a distant place to try to gain vision that seemed an impossibility was only complicated by the cost of the procedure. But Brad didn’t hesitate.

“If we don’t go,” he thought, “we don’t know.”

And so Brad turned to Hermann and the surrounding cities to help Braden in his journey toward sight. The people of Hermann had the insight to see past the stigma of stem cells and recognize that this procedure used umbilical cells. And the money came.

Brad said that he would meet people, shake hands and find a $100 in his palm. Braden received donations from school groups, large gifts from donors and even support from St. George Catholic Church. Someone in Hermann repeatedly left gold coins in the drop boxes posted around town.

The fundraising effort was exhausting for Brad, who also works full-time as a salesman for AAA Insurance. But in June of 2008, they’d raised enough money to take Braden to China for the procedure.

They checked into a hotel filled with others waiting to receive stem cells that could potentially cure their ailments. They came from all over the world and had a variety of diseases—Parkinson’s, multiple sclerosis—and all had found hope in stem cells. Many patients had ONH, just like Braden. There were no guarantees that the injections of stem cells would provide a benefit, and even if they did, the improvement was often gradual at best and leveled out after 18 months.

And then came the pain of the injections shot straight into Braden’s spine. First, doctors removed spinal fluid to make room for the incoming cells. Then came the injection straight into the spinal column. And then there was stillness—at least six hours for Braden to lie perfectly still, not even moving his head under the threat of the spinal pressure inducing a massive headache. Braden was awake for the first spinal injection. Thankfully, he was sedated for the next three. A fifth dose of stem cells were injected via I.V.

It’s not entirely clear how stem cells work, but Brad explains it that the stem cells enter the spinal cord and seek out weak spots in the system. They attach there and take on the characteristics of the extant cells, and the tissues begin to regenerate.

China was “totally different from what you would expect,” Brad said. Braden made friends with the other patients, and the pair struggled with the time change. Hong Kong is 13 hours ahead of mid-Missouri. And, Brad said, one can only eat so much chicken and rice. Braden missed American food.

Braden was unsure of how to handle the attention when he got back from China. So many had given so much money to help him gain his sight. He was grateful, he was hopeful that he could see and grow up like his friends.

But there were no immediate results. Brad took his son for a vision acuity test in November after the China trip, and it showed the vision in his right eye was still 20/400. It appeared as if maybe it was all for nothing.

Doctors in America stay mum about the effectiveness of stem cells, Brad said, because procedures aren’t anywhere near federal approval. And the political climate of the Bush administration drew medicine no closer to finding answers. Some doctors had told Brad that the promise of stem cells in foreign countries was a hoax. Others said that while they can’t say that stem cells are the reason for patients’ success after the procedures, they can’t say that stem cells haven’t made the difference, either.

For Braden, the stem cells started to make a difference, slowly.

The pictures of Braden’s optic nerve tell the story of the stem cells’ effectiveness. The first pictures taken in January 2008 show only a pale line leading to the nerve—a sign of weak blood flow. But the pictures following the China trip showed a fuller line, more blood. And the next set of pictures showed even more blood, more growth. Last May’s pictures showed a relatively robust blood flow to the nerve.

And when they tested his vision in May, the acuity scored at 20/100. Braden’s left eye currently provides him some light detection, and he can count fingers using the eye from about three feet away. In November, Braden will go back to the doctor to check for any more progress.

Because ONH is non-degenerative, Braden will keep the eyesight that he has gained. Brad said that he’s unsure of whether they will seek more stem cell injections, and father and son would rather not have to go to China again. But the stem cell procedures are still unavailable in America, and Brad remains wholly dedicated to doing everything he can for Braden.

Braden began 8th grade at Hermann Middle School in August. He said he was “totally” surprised by all of the support the community gave him over the last years, and he appreciates what his father did for him. He has become less nervous about answering questions about the procedures and his eyesight, and he will spend the rest of his life helping others in situations like his.

Things are getting better for Braden all the time. This summer, he began tying his shoes for the first time, an everyday task once made impossible by his blindness. Brad bought him a bike, and now he rides almost daily with his friends. He skinned up his knees a few times, same as any kid, but he got back on the bike. He says he can now do “most of the stuff” he always dreamed of doing before.

Only a few with ONH are so lucky to have been given the chance at sight, even if it required the concerted effort of a community and a journey to China. Braden knows a girl in Denver whose vision was once as poor as Braden’s. She received stem cell implants that gave her 20/80 vision.

She has her learner’s permit. And someday, Braden might have his, too.

*****

For more information on Braden Hart, click here. His Web site includes a video of Braden scoring a basket in a game last year.

The Harts will be hosting a Stem Cell Awarness Rally from 1:00 p.m. to 5:00 p.m. on Oct. 3 in Springfield, Mo., at the Holiday Inn and Suites Conference Room.

To reach the hotel, call 417-865-8600, or to contact Brad Hart, dial 573-486-2728.

The event will be the eight of its kind in the U.S. Doctors from around the country and a pair of Chinese doctors will attend. Visit www.stemcellaware.com for more information.