Park City Daily News Article
Connecting the dots
Family raises funds so 4-year-old autistic son can make trip to Peru for stem cell treatment
By ALYSSA HARVEY, The Daily News, aharvey@bgdailynews.com
Friday, July 24, 2009 11:44 PM CDT
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Hunter Wilson/Daily News
Dana Emmitt-Hall (right) rubs her 4-year-old son Cameron’s head as he rests Wednesday during lunch period at Red Cross Elementary School. Cameron has autism, and his family is raising funds to travel out of the country to receive stem cell treatments.
After a recent minor car accident, Dana Emmitt-Hall received a gift from her 4-year-old son Cameron - a full sentence.
“He said, ‘We ran into a car. Easy,’ ” she said.
Words don’t come easy for Cameron, though. He has autism, which, according to the National Institutes of Health National Institute of Neurological Disorders and Stroke Web site at www.ninds.nih.gov, is a developmental disorder characterized by impaired social interaction, problems with verbal and nonverbal communication and unusual, repetitive or severely limited activities and interests.
“He’s speaking two- or three-word phrases now. Occasionally he’ll speak a full sentence out of the blue,” said Emmitt-Hall, who lives in the Bon Ayr community outside Park City. “It’s like, thank you, Lord. I know it’s in there. That’s the most frustrating thing.”
Cameron also prefers to play by himself and deals with sensory integration disorder, his mother said.
“Being in a gymnasium or cafeteria is hard times for him,” she said. “He’ll lay down on the floor and have a meltdown.”
Emmitt-Hall wants to give her son a chance to function more like other children his age. So when she heard about an experimental procedure that involves adult-donated umbilical cord stem cells that shows promise for reducing the symptoms of autism, she decided to do more research.
“I’m connected to different autism groups on the Internet. I had spoken to other parents who have had stem cell treatment who have seen progress,” she said. “I heard the hope that it offered. I hope stem cell treatments will help us connect the dots so that he can interact the way a typical 4-year-old boy should interact.”
In the procedure, the stem cells are given either intravenously or through a spinal tap, Emmitt-Hall said.
“They will put him to sleep,” she said. “He will not be awake for the procedure.”
The family - including his father, Kelly, and two siblings - is now in the process of raising money so Cameron can have the treatment. They will have to board an eight-hour flight to Lima, Peru, where Cameron will see Florida physician Burton Feinerman, M.D., who travels there to do stem cell treatments, Emmitt-Hall said.
“We will need to travel outside of the USA to have this done as it is not FDA-approved for use here as of yet,” she said. “We hope we are opening the door for many more children to get this done and for many other disabilities.”
The latest effort is the “Cameron’s Heroes Fundraiser Dance.” Sponsored by the Fraternal Order of Police and the Corvette City Bop Club, the event will be from 7 p.m. to 11 p.m. Friday at the Fraternal Order of Police Lodge, 150 Corvette Drive in Bowling Green. Cost is $7. Types of dances will include bop, swing, waltz, country, slide and line dancing. Concessions will be available.
“You don’t have to know how to dance to come,” Emmitt-Hall said. “There will be people there who will be glad to show you the techniques.”
The dance is just one of the various fundraisers the family has held since January to raise the $12,500 needed for the procedure, Emmitt-Hall said. Stem cell therapy normally cost $25,000, but Emmitt-Hall was offered a discount because she belongs to the Arc of Barren County, an advocacy group that helps people with disabilities.
“We’ve got $9,000 raised so far,” she said. “We’ve still got to cover the cost to get there. We feel the rest will fall into place.”
Emmitt-Hall didn’t expect to be raising a child with autism. Although he had respiratory issues at birth, he seemed to be developing like any other child.
“He was the best baby ever. He was always so happy and so content, always smiling with eye contact,” she said. “He was my third child, so I knew what to expect.”
Then Cameron had his 16-month vaccinations in 2005, and he changed dramatically, Emmitt-Hall said.
“It seemed like he totally spiraled downhill to full-blown autism,” she said. “I took a checklist to the doctor.”
Although she suspected her son had autism, she was still devastated when he was diagnosed Feb. 27, 2006, at 18 months.
“You think you’re prepared for it, but it still feels like the world falls out from underneath you. All your dreams vanish,” she said. “It’s the closest thing I can imagine to losing a child to death.”
Cameron’s family continues to find ways to help him. He has been receiving extensive therapy, including speech, occupational and applied behavior analysis. He has seen a Defeat Autism Now doctor who helped Cameron with the autoimmune issues with his disorder, Emmitt-Hall.
“He takes digestive enzymes to break down the food he’s allergic to. He had terrible intestinal issues,” she said. “He has a multitude of vitamins and minerals. It has all helped ease the symptoms of autism. We still have a lot of difficult days, but just to have him healthier made all the difference in the world.”
To help ease Cameron’s respiratory problems, the family adopted a gluten and caesin free diet, which eliminates wheat and dairy products.
“His respiratory problems immediately cleared up. He had been seeing a pulmonologist at Kosair (Children’s Hospital) monthly,” she said. “It was unreal. When we started this diet, this child came out of the fog. He started sleeping better.”
Cameron is preparing to enter kindergarten at Red Cross Elementary School in Glasgow, where he has been a preschool student for two years.
“He’s fully included in the classroom,” Emmitt-Hall said. “He has an aide to help integrate him in the class so he can be successful.”
Being in a classroom with other students is good for Cameron, she said.
“If you can work through that and motivate them to continue on, they have a greater chance to live a typical life,” she said. “Whenever he gets out of school, he will be readily able to be a full member of society in some form or fashion.”
— Cameron’s family has set up the James Cameron Duncan Hall Special Needs Trust. To donate, visit any branch of U.S. Bank.
For more information
The following Web sites offer information on stem cell research and/or autism:
National Institutes of Health stem cell information, http://stemcells.nih.gov
Stem Cell Regen Med, www.stemcellregenmed.com
Association for Science in Autism Treatment, www.asatonline.org
Autism Research Institute, www.autismresearchinstitute.com
Autism Society of America, www.autism-society.org