Batten disease is a genetic disorder in which waste builds up in the body and kills healthy cells. This disease affects about three in every 100,000 children in the United States and most of them die before they reach their teenage years. Batten disease causes the victim to go blind and become paralyzed before they die, and there is absolutely no cure for it. Martin McGlynn, CEO of Stem Cells Inc., came up with the idea of inserting highly purified neural stem cells into the patient’s brain to the create new cells to replace the ones killed by the waste build up. This idea wouldn’t be a cure to the disease, but a treatment to at least extend the patient’s lifespan. Fetal tissue transplant treatments need to be federally approved on a case-by-case basis due to high moral objections of embryonic stem cells and abortion issues. Since McGlynn was only testing his theory and knew that it would be hard to get a procedure approval, he decided to use a “test subject” and pay for the operation with his company’s money.

Meet Daniel Kerner, a six-year-old Batten disease victim from Trabuco Canyon, California. He’s a second grader at Robinson Elementary School and he’s waiting to die. Daniel’s family was scared for his life ever since two years ago when he was diagnosed with Batten disease and pronounced his death sentence. McGlynn got in touch with Daniel’s father, Marcus Kerner, and proposed his experimental plan of stem cell transplantation and the need for a “test subject” with Batten disease. The McGlynn family initially had many reservations about this entirely experimental treatment that had never been done before. They were over-whelmed with the embryonic stem cell and abortion controversies, as well as the possibility of Daniel’s body rejecting the cells. However, Daniel’s life had been waning away over the past two years as he lost his ability to walk and talk. McGlynn was offering Daniel a chance to get to live his life for longer than expected; maybe five years, maybe ten, maybe twenty, no one knows. The Kerner family agreed to administer the experimental treatment to Daniel last month in Portland. For the first time ever, eager doctors inserted neural embryonic stem cells from aborted fetuses into Daniel’s brain as an attempt to extend his life. Daniel has successfully recovered from his eight hour surgery and is scheduled to return home on December 15 since his body is showing no signs of rejection of the stem cells. “He was a little boy who was basically waiting to die, now he’s waiting to get better,” Marcus Kerner says as he thanks the doctors who helped his son. Thanks to Daniel and his family, this experiment will be conducted on five more children over the course of a year. The results will hopefully help to build towards a widely accepted form of treatment for all Batten disease victims.

-Amy Shah

This entry was posted on Monday, December 11th, 2006 at 9:36 pm and is filed under Stem Cells. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.