Brian Madeux was born with an incurable metabolic disease called Hunter Syndrome. In a bold attempt to correct the genetic code that gave him the disease, doctors have completed an experimental surgery that consists of inserting billions of copies of corrected DNA into Madeux’s DNA chain using a state-of-the-art DNA splitting tool.
Doctors estimate that the 44-year-old from California will have to wait a month or more to see if the experimental surgery was successful. “It’s kind of humbling” to be the first to test this, Madeux said. “I’m willing to take that risk. Hopefully it will help me and other people.”
Dr. Eric Topol acknowledged that this is a dangerous game they are playing as he said in a recent interview, “You’re really toying with Mother Nature.”
One doctor who headed the experimental surgery, Dr. Sandy Macrae, explained what she told Madeux would be happening during surgery.
“We cut your DNA, open it up, insert a gene, stitch it back up. Invisible mending,” she said. “It becomes part of your DNA and is there for the rest of your life.”
The real risk with this is that the spliced DNA must be put in the correct place within Madeux’s DNA chain. Meticulous attention to detail needed as there is no way to recorrect any mistakes once the gene is inserted.
According to the Associated Press, Hunter Syndrome disease is rare as only 10,000 people in the world are estimated to be from suffering from it.
The Mighty has reported that life expectancy for those suffering from the disease is short. In their lengthy explanation of the disease, most are not expected to pass beyond the age of 15.
Because Madeux is 44 years old, there was no red tape that might have been restrictive for the test to be conducted on a minor. No parents or courts would have to be involved.
Madeux wasn’t too concerned about the surgery as he had been in and out of hospital beds for most of his life. “It seems like I had a surgery every other year of my life,” he recalled.
There is a risk that this experimental surgery could be all for nought, but Madeux says he has “been waiting for this my whole life, something that can potentially cure me.”