The Canadian boy known by millions as Baby Joseph, whose parents' struggle to keep him alive sparked an international end-of-life debate, has died. He was less than 2 years old.
Little Joseph Maraachli, 20-months old, died Tuesday, according to Brother Paul O'Donnell of St. Paul, Minn., the family's spokesman and spiritual adviser.
The young boy suffered from the progressive neurological disease Leigh Syndrome.
O'Donnell said Joseph's father, Moe, told him the baby died at home surrounded by his family.
He said it was likely that the child died of complications related to his disease but that the cause of death has yet to be announced.
"The family is very distraught but grateful they had this time with their son," O'Donnell said.
Earlier this year, doctors at London Health Sciences Centre in Ontario refused to perform a tracheotomy to extend the child's life. They said it was futile because the disease was terminal.
A court decided doctors could remove the child's breathing tube.
But Baby Joseph's family refused to let the doctors decide their child's fate. They instead sought help from American hospitals for further treatment.
Cardinal Glennon Children's Hospital in St. Louis, Mo., agreed to treat Joseph. He was brought to St. Louis in March and spent one month at the American hospital.
"All they were really asking for was to bring their son home, and let God decide when and if he should die, not the doctors," O'Donnell said.
A private family graveside service was planned for Wednesday and public service is possible at a later date, O'Donnell said.
The Rev. Frank Pavone, director of New York-based Priests for Life, the pro-life organization that flew Baby Joseph to St. Louis, said the child and his parents "fulfilled a special mission from God."
"Amidst a culture of death where despair leads us to dispose of the vulnerable, they upheld a culture of life where hope leads us to welcome and care for the vulnerable," Pavone said in a statement.
"They had no demands of regarding how long their son would live," he continued. "They just wanted to fulfill their calling to love their child unconditionally and to protect him from those who considered his life worthless."
"We remain convinced that the value of life is not measured in months or years, but rather reflected in the love we share moment by moment," Pavone added.
"We all loved Joseph because God entrusts us to the care of each other," he said.