By Dale McGarrigle, Of The Weekly Staff
Bangor Daily News
Posted Sept. 14, 2012, at 12:17 p.m.
GLENBURN — Now Kenny can read.
Kenny Kelley can now also do many things that other 11-year-olds take for granted. According to his mother, Marty Kelley, that’s because injections of adult stem cells, taken from umbilical cord blood, have helped Kenny to shake off the shackles of autism, with which he was first diagnosed at age 2.
“The results from stem cells can be seen everyday in his amazing thoughts and vast imagination!!,” Marty Kelley wrote in her blog, http://www.kensjourneytorecovery.blogspot.com/. “How lucky we are for such a miracle treatment!”
Autism is a brain disorder found in children that interferes with their ability to communicate and relate to other people. Autism affects 1 in 88 children and 1 in 54 boys. What causes autism has not been established.
Stem cells are the body’s internal repair system and can fix and replace damaged tissue. These unspecialized cells are a blank slate, capable of transforming into muscle cells, blood cells, and brain cells. Stem cells can also renew themselves by dividing and giving rise to more stem cells.
Stem cells taken from umbilical cord blood, such as Kenny received, are the least likely to be rejected.
The stem-cell treatment is the latest effort by Marty and her husband, Donald, to find ways to improve Kenny’s life. The Kelleys also have two other children: Philip, 13, and Caroline-Grace, 6.
First was in-home treatment in a mild hyperbaric oxygen chamber, three hours a day equaling 800 hours over the course of two years, beginning when Kenny was 5 ½ to 6 years old. This was coupled with a Specific Carbohydrate Diet, which restricts the use of complex carbohydrates and eliminates refined sugar and all grains and starch from the diet.
“We saw results right away with the chamber,” Marty recalled in a recent interview. “He made slow gains, such as tracing the alphabet.”
Then the Kelleys discovered on the Internet the story of Matthew Faiella, a New York boy who has been making great strides after stem-cell treatment in Panama for his autism. They decided to follow suit.
Why take this path, when there has been little scientific research into the use of stem cells to treat autism?
“We were willing to do it as long as it’s safe, and I’ve researched this,” Marty said. “Stem cells are very natural. I’m not a scientist, but I care much more than any scientist would, and I would never do anything to hurt my baby.”
When Kenny went for his first stem-cell treatment in July 2009, at the Stem Cell Institute in Costa Rica, Marty assessed the condition of her then 8-year-old son in her blog http://www.kensjourneytorecovery.blogspot.com:
• Behavior: Screaming, aggressive, giggles/silly/inappropriate with his brother or new people, running around, destructive, uncooperative while being dressed, hitting, not potty trained (still wearing diapers).
• Speech: Vocabulary of a 4-year-old. He can talk, but it is difficult for strangers to understand him. Answers some questions, but he does not understand or like why, when, or how questions.
• Physical: A body the size of a 5-year-old boy.
Kenny has had stem-cell treatments in 2009, 2010, and May and November of 2011. The repeated treatments are required because adult stems cells will work repairing cells for a period of time, about six months, then leave the body.
“When I think I’ve seen his skills level out, we’ll go for another treatment,” explained Marty.
What are some of the changes that Kenny has undergone in the past three years? First came the ability to read and clearer speech.
“When he got back, he just picked up a book and started reading, and I could understand every word,” said Mike Hughes, Marty’s brother. “It was like a light just turned on.”
Other gains: Kenny is talking about past events for the first time, and he’s conversational now. He expresses opinions and looking ahead to the future. He was finally potty trained at age 9. He’s doing math now. He’s calmed down considerably. This summer, he went to summer camp, staying overnight for three nights, in the same cabin as Philip.
“There’s no doubt in my mind how much he’s progressing,” Marty said. “We’re working on catching up right now, and how do we best do that?”
The costly treatment, which isn’t covered by insurance, hasn’t been approved yet by the Food and Drug Administration. Despite the fact that the stem cells come from the human body, the cells are considered a new drug by the FDA and are subject to stringent research and testing that can take years.
So this leaves the Kelleys and others like them seeking stem-cell treatment, going overseas to get it.
“It’s just a matter of how much are you going to spend,” Marty said. “There’s no treatment here that was going to do this much for him.”