Moe Maraachli, sits by his terminally ill baby, Joseph. The baby is being kept alive in by a breathing tube in a London hospital.Facebook photo
Baby Joseph Maraachli, the Ontario boy at the heart of a fierce end-of-life ethical debate, has died.
The little boy, who had the progressive neurological disease Leigh Syndrome, had just turned turned 20 months old last week.
He died Tuesday afternoon at his home in Windsor, Ont., with his parents and relatives at his side, said Minnesota Franciscan Brother Paul O'Donnell, a family friend.
His parents made headlines across the world last March when, with the help of American religious activists, they flew Joseph to the United States for throat surgery after Canadian doctors had refused to perform the medical procedure.
"They're obviously grieving the loss of a child. They're very sad and very distraught," Brother O"Donnell said in a telephone interview Wednesday.
"But they're glad they did what they did and grateful for the extra seven months they had with their son at home."
Joseph's parents, Moe Maraachli and Sana Nader, had lost another child to the same neurodegenerative disease eight years ago.
Joseph, who was diagnosed in October, needed a ventilator and a feeding tube.
Doctors at London Health Sciences Centre said he had no hope of recovery and recommended his breathing and feeding tubes be removed.
His case sparked petitions and public campaigns as Fox News in the U.S., along with conservative and religious activists criticized the hospital and the Canadian health-care system.
After an Ontario court ruled that doctors could remove the child's breathing tube, the parents took Joseph to a St. Louis hospital, thanks to the help of New York City-based Priests for Life, which lobbies against abortion rights and euthanasia.