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Life lost at hospital inspires a legacy

Friends and family called Matthew Siravo "the angel boy."

The brain seizures that began 10 days before his first birthday brought Matthew a host of physical and learning difficulties. It was hard for him to sit still and pay attention -- except in church. There, family friends said, he would stand in the aisle throughout the service, mesmerized by the music, sometimes raising his hands as if reaching up to God.

"His challenges were different than most, but he had such a happy disposition," said Cindy Sheehan, a neighbor of Matthew's family in Wakefield, R.I.

Matthew's parents, Richard and Debra Siravo, confirmed this weekend for the first time that their 5-year-old son was the patient in the case cited last week by the state Department of Public Health in a scathing report that raked Children's Hospital in Boston for the handling of Matthew's case and three others. The Siravos declined to speak about their son's care at Children's.

But friends of the family reminisced this weekend about the child and described how Matthew's parents, since his death, have spent much of their time looking for ways to help other children with epilepsy.

"We were all inspired by how loving his nature was, how spiritual he was, how happy he was, and how hard the Siravos worked to help him," Sheehan said.

Matthew Siravo died May 11 at Children's, after a series of miscommunications and mistakes that a Department of Public Health official called "one of the worst cases we've ever seen."

On May 9, after surgery to place seizure monitoring sensors in his brain, the boy suffered a seizure. Doctors and nurses, confused about who was in charge, failed to treat him aggressively, and he stopped breathing.

His case -- along with three others that featured problems with communication and accountability -- sparked a review of Children's Hospital's Massachusetts hospital license and its right to collect Medicare and Medicaid payments. The hospital has apologized and vowed to make changes.

In honor of their son, the Siravos have launched a foundation to promote awareness about epilepsy and plan to offer two $1,000 college scholarships each year to local youngsters with the condition.

They have raised money for a playground designed for children with special needs at the Hazard School in Wakefield, which Matthew attended. Matthew's brothers -- Joe, 14, Stevie, 12, and Christopher, 10, have pitched in, too, joining the foundation as "junior board members" who will tend the flowers around two planned memorial benches.

"They've really turned a heartbreaking situation into something very positive," said Kathy Fogarty, the family's next-door neighbor and the director of the Matthew Siravo Memorial Foundation. Sheehan, who also volunteers for the foundation, said hundreds of community members had rallied around the family.

In their own style, the Siravos are following in the footsteps of other families struggling with medical tragedies: John McCormack, who lost a daughter in 2001 in another case of miscommunication at Children's, has built two playgrounds in his hometown of Pembroke and lobbies for more legal accountability from the medical profession. Earlier initiatives to reduce medical errors were launched in memory of Betsy Lehman, who died in 1994 after a chemotherapy overdose at Dana-Farber Cancer Institute.

The Siravos created a booklet called "My Friend Matty -- A Story About Epilepsy" to teach children about the disease. And their website offers parents a simple, clear explanation of seizures, changes in awareness or behavior caused by a kind of electrical storm in the brain.

It stresses that early diagnosis can help children better deal with the safety risks and the educational, social, or behavioral problems that can come with repeated seizures. It lists seizure symptoms that can easily be mistaken for normal childhood behavior: sudden falls, short attention blackouts that look like daydreaming, rapid blinking, complaints that things "look, sound, taste, smell or feel funny."

Fogarty has slated a fund-raising golf tournament for Oct. 28. By next Mother's Day, the Hazard School plans to finish building the playground, which will include an outdoor piano marked with the notes of Matthew's favorite song, "Twinkle, Twinkle, Little Star."

Matthew was usually the first student to arrive, with his father, and would greet every teacher with a hug, recalled Ruth Gallucci, a teacher at the school.

"He just loved life, loved movement, loved singing," she said. "He just brought some sunshine in our program that we're really missing right now."

For more information, go to www.mattyfund.org. To contribute to the playground fund, write: South Kingstown Inclusionary Fund, Hazard Building, 153 School St, Wakefield, RI 02879. Anne Barnard can be reached at abarnard@globe.com.

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