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Words from the Heart
10-year-old Sean Anderson's legacy is the gift of speech -- a device he wore is now improving the life of another child who stutters.
By Linda Shrieves
Sentinel Staff Writer
June 20, 2004
To his friends, Sean Anderson was a jokester, an honor roll student and a 92-pound "king of one-liners."
So when the 10-year-old died suddenly in February, hundreds of cards and letters from his classmates poured into his parents' Ocoee home.
Shaken by their son's death, Andy Anderson and Martha Lopez-Anderson turned to the letters for comfort. They wanted the world to remember Sean as a remarkable, lovable kid. At first, they planned to donate Sean's organs. But, in the course of trying to save Sean's life, doctors had performed so many procedures that his organs could not be used.
So the Andersons gave something equally precious -- they gave the gift of speech to another child.
A struggle with words
Sean Anderson had always been a happy kid. But, inexplicably, at the age of 7, he began stuttering. Sean's parents took him to specialists and paid out of their pockets for therapy, but Sean's stuttering grew worse.
He soon began making jerky gestures with his hands when he talked or craning his neck and looking at the ceiling. Those were Sean's efforts to push the words out of his mouth -- a struggle he was fighting with his body.
Privately, Martha and Andy worried their outgoing, jovial son might become self-conscious and begin to withdraw. Already they'd noticed that when he labored to say a sentence, he'd give up. "Forget it," he'd say.
In August 2002, a friend told Martha about a Good Morning America segment on a device that looked like a hearing aid but could help stutterers. Martha scoured the Internet and learned that the gadget, the "Speech-Easy," had been invented by researchers at East Carolina University.
The idea was simple. Because many stutterers don't stutter when they speak in unison -- reciting the Pledge of Allegiance, for example -- ECU researchers devised an earpiece that creates a vocal echo in a stutterer's ear.
Finally, in April 2003, Martha, Sean and Andy found Janet Skotko, a Tampa speech pathologist who had experience fitting the SpeechEasy.
In the office, Skotko asked Sean to read a paragraph. Sean struggled, stuttering 10 times in little more than a minute. Watching him labor over the words, Skotko stopped him. Then she put a SpeechEasy device in his ear, and asked him to re-read the paragraph. Two stutters.
Amazed, the Andersons agreed to pay $6,000 for the earpiece. Although insurance wouldn't cover the cost, the couple dipped into their savings -- and wrote a check on the spot. When other speech professionals pooh-poohed the SpeechEasy, which had been on the market only since 2001, Martha had a quick reply.
"You don't live in his shoes," she told them. "You don't have to deal with what he deals with every day."
When the custom-fitted device arrived in May, Sean quickly adjusted to it. He learned to say "ummm" before a sentence to activate the earpiece. He stopped gesturing and arching his neck when he wanted to speak. He began to have regular conversations, without the halting, frustrating delays. And he began to feel more confident.
"He was more open and more comfortable in his own skin," says Skotko. "He wasn't afraid of talking to anyone. He was just a happy camper."
'Prepare for the worst'
On Sunday, Feb. 15, shortly after noon, Sean skated to a friend's house down the street. After he left, Martha drove off to go shopping.
On the way out of her neighborhood, she passed an ambulance heading in. Grabbing her cell phone, Martha called the house to make sure that her mother, who lived with the family, was OK. She then dialed a neighbor with heart problems to make sure he was all right.
Andy, meanwhile, was in the shower when two neighborhood boys banged on the front door. After Andy opened the door, one of the boys handed him Sean's glasses and said, "I think your son's been hurt." Andy raced down the street toward the ambulance. He could see paramedics frantically trying to revive Sean. Andy knew the prognosis was bad. Crying, he collapsed in the grass and prayed.
Then he called Martha with a terse warning: "Honey, prepare for the worst."
At the hospital, they agonized in the waiting room for hours. Then, at 6:30 p.m., a doctor told them Sean was dead. And no one knew why. Doctors and medical examiners still cannot explain what happened.
The Cuba connection
For weeks, Martha and Andy were numb. They missed Sean's laugh, their silly breakfast conversations, his singing. Unable to donate Sean's organs, Andy and Martha decided to donate something that had made Sean happy for nine months: his SpeechEasy device.
The Andersons wanted the earpiece to go to a child whose family couldn't afford one. Skotko immediately suggested two children. One was a 13-year-old boy from Naples whose family couldn't qualify for credit.
Martha began asking questions about him. What she discovered piqued her interest. The boy's name was Lazaro, and he was from Cuba.
Martha felt tingly. Her father, who had died when she was a baby, was named Lazaro. And he, too, was from Cuba.
A young kindred spirit
Like Sean, Lazaro Arbos began to stutter when he was 7. Every week, his parents traveled by bus -- or borrowed a car and scraped together gas money -- to drive 37 miles from their hometown of Batabanoto to a Havana children's hospital for speech therapy.
When the Arbos family won a lottery to leave Cuba in 2001, they settled in Naples. But as Lazaro worked to learn English, his stuttering grew worse. At school, the usually social Lazaro was mortified that he couldn't coax the words out of his mouth. Worse, his classmates made fun of him.
"It traumatized him a bit," says his mother, Gisela. "He would pound his chest because the words wouldn't come out."
One day, however, Gisela Arbos' boss mentioned a device he'd seen on TV -- something that might help Lazaro.
Gisela learned as much as she could about the SpeechEasy. Soon, she and her son landed in Skotko's office. When Skotko tested Lazaro, the results were heartwarming. Without the device, Lazaro stuttered 35 times while reading for two minutes. With the device, he stuttered seven times in two minutes.
The Arboses, however, were devastated to learn that they couldn't qualify for credit. "That's where it ended," says Gisela, recalling how their hopes were dashed. "Just like that."
That is, until April, when she got a call from Martha Lopez-Anderson, Sean's mom.
The words begin to flow
In May, when Lazaro arrived at Janet Skotko's office to be fitted with Sean's SpeechEasy, he was nervous and excited.
The families were, too.
Gisela Arbos cried, anguished over Martha and Andy's loss. They hugged and kissed.
Martha showed Lazaro a picture of Sean.
"This looks like me," Lazaro told his mother. They both had the same sparkling eyes, even the same cowlick.
In mid-May, Lazaro received the SpeechEasy.
It has given him hope, if not perfect speech.
Though his stuttering hasn't disappeared, he practices reading passages aloud every day, just as he practices piano. This summer, the Andersons plan to take Lazaro to Universal Studios.
For both families, the journey has been an emotional one.
"Sometimes I think," says Gisela, "maybe Sean is an angel that God sent to my son."
And sometimes, Martha Lopez-Anderson thinks that, too.
Linda Shrieves can be reached at 407-420-5433 or lshrieves@orlandosentinel.com.
