Amy Girouard never heard of Angelman Syndrome until her 11-month-old daughter, Allison, was diagnosed with it nearly two years ago.

A rare and incurable neurogenetic disorder, Angelman syndrome occurs in one in every 15,000 live births. It's marked by severe developmental delays, lack of speech, seizures, and motor and balance problems.

When doctors first identified the condition in Allison, it was hard to accept, Girouard said. An internet search yielded frightening results, and Girouard said she worried her daughter would never lead a "normal" life.

"For a while, I didn't want to admit she had Angelman syndrome or that she was different in any way," said Girouard, 38, of Concord. "A lot of the research shows devastating facts . . . that children with Angelman's will never be able to speak or communicate. My fear was that this was all Ally could be."

The warning signs started to appear when Allison was 8 months old. Girouard and her husband noticed she wasn't meeting developmental milestones: She didn't babble like other babies her age, she had trouble sitting up by herself, and her movements were

shaky. She was colicky, couldn't gain weight and frequently spat up food, Girouard said.

Alphabet therapy

Last year, Girouard lost her husband, Jay, to cancer at age 39. She was left to care for Allison and an 8-year-old son, Josh, on her own. Her world was turned upside-down and shattered, she said. She took a year off from her job as a social worker to focus on her family and personal life.

By then, Allison had enrolled in the Early Education and Intervention Network of New Hampshire, a group that works with infants and children with special needs. What Girouard learned about Angelman Syndrome there "showed a much different picture of the disorder."

There's a chance Allison may never be able to talk or walk on her own, but through various types of physical, occupational and speech therapy, she can improve the odds.

"She has a lot going on cognitively," Girouard said. "Just because a child can't speak doesn't mean they can't communicate."

Girouard continued gathering information and one day came across the Alphabet Therapy Project, a learning method developed by researchers at Tennessee's Vanderbilt University. The mission is to identify and facilitate techniques that help children with Angelman's learn using the alphabet and numbers, allowing them to demonstrate what they've learned to others. The nonprofit organization offers workshops to families and professionals across the country.

Girouard and her partner, Chuck Crush, helped bring one to Concord over the weekend.

On Saturday, two Angelman's experts from Vanderbilt - Terry Jo Bichell and Fae Lois Lumauag - visited Conant Elementary School and conducted an eight-hour session for a group of about 20 teachers, paraprofessionals and family members mostly from Concord and as far away as New Jersey.

Bichell, whose youngest son, Louie, has Angelman syndrome, said when his teachers told her he was "unteachable," she began collecting cases of children with the disorder who had extended literacy, meaning they could read and type.

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