Meriden mom hopes experimental treatment will help autistic son

Meriden mom hopes experimental treatment will help autistic son

Record-Journal


MERIDEN — The music of Chris Brown plays in the living room of Sandra Jackson’s Elm Street home as her 16-year-old son, Shunnar Jackson Adkins, clasps and unclasps his hands, swaying back and forth to the beat with a smile as he quietly recites the lyrics.

“Go Shunnar!” Sandra Jackson chants. “He loves Michael Jackson and Chris Brown.”

A fundraiser next month will raise money for the autistic teen to travel to Mexico to undergo an experimental stem cell treatment his mother hopes will give him a more independent future. Scientific experts, however, say the treatment has not been clinically tested and could pose health risks.

Jackson, a single mother, spends her days as her son’s full-time caregiver, driving him to up to seven medical appointments a week in an effort to find solutions for the pain and discomfort he experiences daily. Diagnosed with autism at 2, Shunnar has trouble communicating and suffers from seizures, headaches, gastrointestinal pain and recent unexplained weight loss. A sophomore at Maloney High School, he misses school frequently, Jackson said.

Autism is a variety of conditions that begin in early childhood and can include difficulties with communication and social skills, according to Judy Falaro, Quinnipiac University’s director of special education programs.

“They may not communicate in a traditional sense, they may use behaviors as their main communication and may not be able to use our traditional methods,” Falaro said. “They have strengths but they have differences and the differences are what makes them stand out.”

While Shunnar can memorize lyrics after hearing a song once or twice, his speech fluctuates from a whisper to a yell. The family has tried occupational therapy, physical therapy, cranial treatments, neurogenetic testing, and karate.

Jackson learned about stem cell therapy on the internet. She contacted a Florida doctor who travels to Mexico to perform the procedure. Treatment is expected to cost between $15,000 and $20,000. The therapy has not been clinically tested in the United States.

“As a parent with a child with autism, yes you’re desperate, but not so deep you want to put your child in danger,” she said. “I haven’t seen any negative stories about it yet.”

Jackson said other parents have reported improvement after the treatment.

Stormy Chamberlain, assistant professor in genetics and genome sciences at UConn, uses stem cells to study brain and nervous system disorders and has conducted some studies on autism.

A stem cell is capable of renewing itself or creating other types of cells, Chamberlain said. While some stem cell treatments are unregulated, others are not approved for use in the United States.

“Stem cell transplants are not necessarily safe and there’s a reason they are not approved in the United States and it largely has to do with safety,” Chamberlain said.

Chamberlain cited a recent unapproved treatment that left three women blind at a South Florida clinic.

From a scientific standpoint, Chamberlain believes using stem cells to treat autism is not a good idea.

“For autism spectrum disorders, those of us who study neurodevelopment disorders know these disorders are caused by deficits in neurdevelopment and a lot of that happens in the embryo,” Chamberlain said. “The idea of sticking stem cells into an individual with hopes of changing neurodevelopment that’s already happened is almost ridiculous.”

Chamberlain also cautioned against the potential hazard of traveling outside the country for medical procedures.

“The problem with going to get a stem cell therapy in Mexico is there’s no assurance of the safety or the scientific rational behind the treatment,” Chamberlain said. “They will happen in the United States as the scientific rational becomes strong and some of the safety issues are worked out.”

While Falaro could not speak to the effectiveness of stem cell therapy on autism, she understands the plight of parents like Jackson.

“I have seen it before where parents are desperate to try and find some sort of an answer and so they will go out of the country or try something that’s off the beaten path that hasn’t been tried and approved yet,” Falaro said.

Chamberlain believes approved scientific testing could unlock the answers Jackson seeks.

“I feel for families that feel desperate like that and I think that this underscores the need for more support for biomedical research,” Chamberlain said. “We scientists sincerely hope we can fix this.”

Behaviorist Kelly Martoni, who works with Shunnar, believes the unconventional treatment is worth exploring.

“I think anything that is going to help Shunnar’s quality of life is worth trying,” Martoni said.

Jackson, who has organized support groups for parents of children with special needs, said she draws her strength from God.

“I pray a lot,” she said.

In her living room Friday, cats brushed up against the furniture as a Michael Jackson dance video game showcased the singer’s iconic moves on the television. After putting on a Chris Brown music video, Shunnar got off the couch and started dancing, shifting his weight slowly back and forth as his hands flexed wildly, his head cocked to the side with nervous eyes but a vibrant smile, softly murmuring, “go Shunnar.”

Jackson isn’t expecting a total cure, but hopes the therapy will make her son “more social, more independent.”

“More able to do for himself because when I’m gone I want to make sure he’s OK,” Jackson said. “When we’re gone our children need to live on and we want to know at the end of the day we did our best for the fight against autism.”

The fundraiser will take place April 15 at the Masonic Temple, 112 E. Main St., and will include dinner, vendors and raffles. Tickets are $30 for adults and $15 for children.

For more information, visit goshunnar.org or call 203-408-9771. A donation page has been set up at www.gofundme.com/goshunnar.

ltauss@record-journal.com
203-317-2231
Twitter: @LeighTaussRJ


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