Ian Joyce, 19, advocate for Batten disease

December 08, 2003|By Michael Stroh | Michael Stroh,SUN STAFF

Ian Joyce, who helped raise awareness of Batten disease, died Thursday at his Ellicott City home of complications from the rare genetic disorder. He was 19.

For more than a decade, Ian and his identical twin, Joe, who died in 2000 from the disease that affects the nervous system, were regulars on Capitol Hill. Accompanied by their parents and the head of a San Francisco foundation dedicated to Batten disease, the twins helped persuade lawmakers to boost funding earmarked for a disease that strikes fewer than four of every 100,000 children born in the United States.

Although the disease robbed Ian and his brother of the ability to speak and see, "their mere presence made a big impact," said Dr. J. Alfred Rider, president of the Children's Brain Disease Foundation in San Francisco.

Dr. Rider said that before Ian and his brother began to accompany him on his annual lobbying trips, lawmakers were relatively indifferent to the disease. But after they saw the Joyces, whose plight was chronicled over the years in The Sun and in many other publications, that changed.

"When you see twins, it sticks in your mind," Dr. Rider said.

Ian was the older of the twins, born four minutes before his brother. At first he and Joe seemed healthy. By the time he was 3, Ian knew his ABCs, recognized the McDonald's golden arches, and could sing nursery rhymes, said their mother, Rosemarie Joyce.

But then she and her husband, Michael Joyce, started noticing problems. "They started to trip over curbs," said Mrs. Joyce, a nurse for the Howard County public schools. Soon the boys were stumbling over words they knew.

In 1989, the twins received a diagnosis of Batten disease. Doctors said the condition would only get worse: The twins would become blind and mute, suffer seizures and dementia, and lose the ability to walk and feed themselves. Children with the disease rarely survive into their teens.

Ian and his brother attended the Maryland School for the Blind before transferring to Cedar Lane, a school for profoundly disabled students in Columbia.

Jo Ann Hallam, who taught Ian and his brother from sixth to 11th grades, says that although they could not communicate and probably did not understand what was happening to them, they had distinct personalities.

Ian liked listening to Star Wars, and having his face massaged with lotion and his hair combed, she said. He liked swing music and the taste of citrus. "He would literally lick his lips," she said.

And he always wore green or purple, a technique his parents used to help others tell the twins apart.

"The twins had a gift," said Cedar Lane's principal, Nicholas Girardi, who recalls Ian breaking into a smile when he heard someone familiar call his name or touch his head.

"They helped cheer you up," he said.

They may also have unknowingly helped other children with the disease. Although the deadly disease remains incurable, scientists in the past decade have made headway, discovering many of the genes that underlie the condition and developing a genetic test.

A funeral Mass was offered Saturday at the Roman Catholic Church of the Resurrection in Ellicott City.

In addition to his parents, Ian is survived by two brothers, Conor and Andrew, both of Ellicott City; and his maternal grandfather, Henry Zerhusen of Catonsville.

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