If you saw Neil Barron on the street, you might notice that he’s confined to a wheelchair. You might notice that his muscles are tight and rigid, and when he speaks to you, you might hear that his speech is slow and deliberate.
But you won’t see Neil Barron on the street. The 30-year-old Phenix City resident, who was diagnosed with cerebral palsy before he turned 2 years old, is home-bound.
The physical manifestations of CP are what people might first notice about Barron and they might make stereotypical judgements about who he is or what he is capable of. But once you start talking to him it becomes apparent that he is an intelligent, articulate, artistic and determined man who has gained knowledge and strength from his struggles.
You’ll learn that he loves to paint, draw and write poetry.
That he graduated summa cum laude from Chattahoochee Valley Community College with an Associate of Arts degree and he’s currently at a stand-still on his Bachelor of Science degree in psychology from Troy University due to transportation issues.
And you’ll learn that all Barron really wants is to be able to be a productive member of society.
According the Mayo Clinic’s website, cerebral palsy, or CP, “is a disorder of movement, muscle tone or posture that is caused by injury or abnormal development in the immature brain, most often before birth.”
There is no cure for CP, but over the past 4 years Barron’s research has led him to a company in China called Bieke Biotech. The facility provides adult stem cell therapy in addition to various physical therapies that aim to improve the quality of life for people with cerebral palsy and other afflictions, such as multiple sclerosis and muscular dystrophy.
The biggest obstacle to Barron participating in the therapy is the cost. And the biggest obstacle in raising money is the stigma many associate with stem cell research and China, Barron said.
“There’s a lot of skepticism about China, but what people don’t realize is that China is only the location,” he said. “The Chinese really didn’t invent anything. They brought in scientists and researchers from all around the world and the Chinese government funded the research.”
The adult stem cell therapy that is used at Bieke is not yet available in the United States because it has yet to be approved by the U.S. Food and Drug Administration, a process that involves testing and trials and can take years to become available to the public.
Barron and his grandmother, Hazel Willis, whom Barron lives with, said that he has already put down a $9,000 deposit for the year-long therapy program in Shenzhen, China; however, he still needs about $40,000 more to pay for the entire process.
To raise the funds, Barron is using his artistic talent by selling his art work.
About what inspires him to draw, paint and write poetry, Barron said, “One thing that has always fascinated me is human emotion and the human condition. One of the things that I find disturbing about current times is, especially now, everyone’s in survival mode and compassion seems to be in short supply. I lie awake thinking at night if I were out in the world all the good things I could do and all the lives I could touch.”
He currently has his paintings displayed on his Facebook page and is asking that potential buyers make him an offer.
Donations can also be made to the tax deductible Neil E. Barron Medical Expense Fund at Regions Bank, 1200 Broad St. .
The treatment
In addition to the research that Barron has done online, he has also traveled to state-side conventions where he has spoken with doctors from Bieke, as well as people who have undergone their therapy treatments.
“I’ve spoken to hundreds of people, both on Facebook and in person, who’ve received these treatments and four or five years after treatment, to this day, not one of the hundreds of people who I’ve spoken to have experienced any negative side effects of any treatment done by Bieke Biotech,” Barron said.
He said that the year’s worth of 2-hour-a-day, 6-day-a-week therapy sessions would make him more mobile and strengthen his body, helping him to support his own weight.
“Even if I couldn’t walk, just the benefits from the rehab therapies alone, that much attention for one year in a hospital, the stem cell treatment aside, ... I know would probably give me the ability to stand up and to transfer into a car,” Barron said. “In addition to that my visual scanning and tracking abilities would improve.”
Barron knows it’s a lot of money to raise, but he’s hoping to appeal to people who will think about the long-term implications.
“I found out that for each person placed in a nursing home, for every single person, the federal government spends $50,000-$80,000 a year and that’s just on basic necessities,” Barron said. “I could potentially live 50 more years. If you multiple $50,000-$80,000 times 50 ... , it costs $6 million to $9 million to take care of me through the course of my remaining lifetime.”
As long as Barron is home-bound and unable to work, he will have to rely of Medicare, and therefore the tax-paying public, to cover his health care expenses.
“He wants to be a tax payer,” said Willis, his grandmother.
He also just wants a better quality of life.
“People can say what they want about the stem cell (therapy) — that it’s a placebo, that it doesn’t work — but it’s the combination of all these different elements that can really revitalize and renew a person’s life,” Barron said. “It cannot be denied that a lot of these patients that have traveled overseas, according to their own testimony, have experienced a renewed quality and improvement in life. And so big deal if someone says that it’s a placebo effect or that the doctors can’t explain exactly how it works, the improvement in a person’s given life speaks volumes. And that’s truly what is important beyond anything else.”
