Before his 15th birthday, Michael Charles Metil swam with dolphins in Panama, watched whales in Boston and rode a hot-air balloon over Somerset. His mother, Cay Welch, made sure he never missed an opportunity to travel the world -- even though he suffered from severe brain damage.
"He was not an isolated child, unlike a lot of children like him who end up cloistered," Ms. Welch said. "His world was wide and huge."
Michael died in his sleep Saturday at home in Blairsville, Indiana County. He was 15 years old.
Michael's parents discovered that he suffered from glutaric acidemia 1, an enzyme deficiency disorder, when he was 11 months old. The disease impairs a person's ability to metabolize protein. When Michael became ill and dehydrated on Christmas Day in 1994, the Metils took Michael to the hospital, but his brain had already begun to hemorrhage because of a reaction to food. The damage was irreversible -- he would never be able to walk or talk.
Ms. Welch said the brain damage could have been prevented if Michael had been screened for GA-1 at birth and his diet had been regulated. But at the time, Pennsylvania law did not require infants to be screened for rare diseases like GA-1. After Ms. Welch discovered that Michael suffered from the disease, she established a foundation -- the International Organization of Glutaric Acidemia -- to encourage other parents to screen their infants for the disease at birth. The organization also serves as a link to connect parents of GA-1 children with medical resources and with other families affected by the disease.
In 2001, his parents started the Michael Charles Winery and donated all the proceeds from the business to the International Organization of Glutaric Acidemia. They used a picture of Michael as part of the official logo of the winery.
"He was very beautiful," Ms. Welch said. "I mean, we put his face on a bottle of wine -- we thought he was that good-looking."
Michael was a simple kid who enjoyed "Mister Rogers' Neighborhood" and the soundtrack to "The Little Mermaid," said Beth McCabe, his teacher at the Clairview School in Greensburg, a center for students in Westmoreland County with special needs. Ms. McCabe said his class nickname was "Metil-Man," and he would dance with his teachers whenever they played music.
"He loved music, and he always mouthed along to the songs," Ms. McCabe said. "We just had so much fun with him. He was a joy to work with."
Michael died one week before his favorite holiday, Independence Day. His favorite part of the holiday was the fireworks, Ms. Welch said, and he never feared the bright flashes or loud booms. Instead, he always wanted to move closer.
"You'd never see anyone who smiled as much as him during fireworks -- no one who laughed harder or enjoyed them more than him," Ms. Welch said. "Things like that -- they were small things, but they were very magical to him."
In addition to his mother, Michael is survived his father, Michael G. Metil.
Visitation will be today from 2 to 4 and 7 to 9 p.m. at the Shoemaker Funeral Home, 49 N. Walnut St., Blairsville. A Mass will be celebrated at 10 a.m. tomorrow in St. Vincent Basilica in Latrobe. At noon Thursday, there will be a second memorial service and interment at the Cedar Run Baptist Church.
Martine Powers can be reached at firstname.lastname@example.org or 412-263-1308.