Amite family on a mission for sight

[~MaryO~]

http://www.2theadvocate.com/news/23731329.html

 

 

Amite family on a mission for sight

• By DEBRA LEMOINE
  
• Advocate Florida Parishes bureau
  
• Published: Jul 6, 2008 - UPDATED: 12:05 a.m.
  

Comments (0)AMITE ? Connor Corkern and his parents are prepared to go to the end of the earth in their quest to cure the 18-month-old?s blindness.

 

They plan to board a plane on July 13 to Qingdao, China, where they will spend a month in a foreign hospital, so the child can receive a controversial adult stem cell therapy procedure that they and their physicians think could help the boy see.

 

And, on their trip, the Corkern family joins a growing number of U.S. residents traveling to China and other nations to seek stem cell therapies that are not only unavailable in the United States but also are considered medical scams by most U.S. medical researchers.

 

Connor Corkern was born with congenital panhypopituitarism and optic nerve hypoplasia, a rare condition that means his pituitary gland is not fully connected to his brain and that his optic nerve is underdeveloped, said Dr. Hunter Bond, an ophthalmologist with offices in Livingston and Tangipahoa parishes, who treats Connor.

 

The pituitary gland problem means that Connor?s body doesn?t make many of the hormones he needs. For example, the child takes supplemental growth hormones, his mother, Katie Corkern, said. The underdeveloped optic nerve is the sole reason for the child?s vision problems, Bond said.

 

Otherwise, Connor is a healthy, giggling baby, who loves to play patty-cake and is trying to crawl. He is beginning to talk and can say, ?ma ma? and ?da da.?

 

And, he is learning to navigate his world without his sight.

 

?He hears so well, he can?t sleep at night,? she said.

 

But his parents, Katie Corkern, a 25-year-old private school teacher, and Coye Corkern, a 29-year-old state trooper, both residents of Amite, want more for him.

 

Katie Corkern said she learned about the stem cell therapy through an Internet support group.

 

?At first, I didn?t think it was true,? she said. ?It was a hoax, preying on us vulnerable moms who want to do everything for their kids.?

 

Then, she started talking to the parents who had already gone to China, reading their blogs and seeing the before and after videos posted online. She also called many of them to hear their stories firsthand.

 

?Every kid that has gone has had positive results,? Katie Corkern said.

 

But those positive results aren?t complete cures, she said. Sometimes, it?s slightly improved vision. For Katie Corkern, any improvement for Connor would be a success, she said.

 

So, for the past five months, the Corkerns have held fundraisers from Kentwood to Ponchatoula to raise the $60,000 needed to pay for the trip to China and Connor?s medical treatment.

 

During the same time, they had to find doctors willing to work with counterparts in China to help him get the medical care and then be willing to follow him after he returns.

 

?We spoke to many doctors who told us we were crazy for going,? Katie Corkern said. ?They told us to wait two years or let them try it out on other kids.?

 

She also writes her own blog detailing the family?s odyssey in raising the funds to make the upcoming trip, at http://www.connorsquestforsight.com.

 

In China, Connor will receive adult stem cells from umbilical cord blood, Corkern said. The cells will be given to him five times intravenously and four times through a lumbar puncture in his spine.

 

The hope is that these stem cells, which are cells that haven?t developed enough yet to have a specific function, would migrate to different places in Connor?s body and develop into the missing cell types that he needs, Bond said. For example, the stem cells could go to his optic nerve and become new nerve cells that could complete the boy?s underdeveloped optic nerve, he said.

 

Medical tourists

 

There are no statistics available on how many U.S. residents seek stem cell therapies in other parts of the world. But the practice is happening so often that the International Society of Stem Cell Researchers has formed a task force to write a guidelines for people such as the Corkerns who seek these treatments.

 

?I can tell you it?s a worldwide problem,? said Dr. Claude Gerstle, a retired ophthalmologist who is on the task force. ?To see one child and one family taken advantage of is very difficult.?

 

Doctors in places like China, Thailand and Mexico are offering adult stem cell therapies for everything from spinal-cord injuries to autism. And, what worries the researchers, is the lack of hard evidence showing that these therapies work.

 

There are case studies posted on the Web site for Beike BioTech, the Chinese company offering the stem cell treatment that the Corkerns seek, about their stem cell treatments.

 

But these case studies don?t hold the same weight in the scientific community as research formally published in peer-reviewed journals.

 

And, the studies tout only successes and don?t report failures as a formal study would, he said.

 

Gerstle said he looked into stem cell treatments for himself after receiving a spinal cord injury several years ago that forced him into an early retirement. He found no hard evidence supporting these treatments, he said.

 

Studies on stem cell treatments from umbilical cord blood have shown to be effective in treating leukemia and some metabolic disorders, because these cord blood-derived stem cells are turning into specific blood cells to treat these conditions, Gerstle said.

 

However, the neural cells that Connor needs are a different story, because these cells have more complex structures than blood cells, he said. There is no evidence showing that a blood-based stem cell can become a neural cell once injected into the body, he said.

 

?Scientifically, this approach lacks anything understandable,? Gerstle said.

 

And, if these umbilical cord stem cells could heal Connor, they would have worked in the womb when his blood was full of these stem cells, Gerstle said.

 

Another concern is that Connor is receiving stem cells from donors. Just as in a blood transfusion, there are risks that Connor?s body could reject these cells, he said.

 

Praying for a miracle

 

Bond, who has been treating Connor since April, thinks that there is enough evidence about such stem cell treatments to at least try it.

 

He said he didn?t want to get into the politics of medical research and stem cells. He said he wants what he thinks is best for his patients.

 

?How he?s going to react and what?s going to happen, that?s what our faith is based on,? Bond said.

 

On the Internet: Connor?s blog: http://www.connorsquestforsight.com