ST. LOUIS (Reuters) - A 20-month-old Canadian boy with an incurable neurological disorder whose life was extended in the United States after a Canadian hospital declined further treatment, has died at his Ontario home, a family spokesman said on Wednesday.
The plight of the boy, known as Baby Joseph, drew attention in both countries, where end-of-life issues including abortion and euthanasia have stirred passions and political activism.
A Canadian hospital where the boy, Joseph Maraachli, had been treated, as well as several U.S. hospitals, refused further treatment of the child and had recommended allowing him to die at home.
Baby Joseph, who suffered from Leigh’s disease, was brought to Cardinal Glennon Children’s Medical Center in St. Louis by his father and Frank Pavone of the New York-based anti-abortion organization Priests for Life.
While in the U.S. hospital, the boy was given a tracheotomy to allow easier breathing and sent back to his home in Windsor, Canada, where he died on Tuesday evening.
“He passed away peacefully at home with his parents and family at his side. Praise God he had seven precious months with his family to be surrounded by love and was not put to death at the hands of doctors,” family spokesman Brother Paul O‘Donnell said in a Facebook posting.
“We want to thank God and everyone else for the support. I don’t think he would have made it that long if there weren’t those prayers from all over the world,” Maraachli’s aunt, Faith Nader, told Canadian television.
Doctors at the London Health Sciences Center hospital in London, Ontario, had recommended sending the baby home in March but allowed the transfer of the child to St. Louis “despite the strongest possible medical advice to the contrary.”
Pavone issued a statement Wednesday from Amarillo, Texas, saying, “This young boy 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 was also involved in the case of Terri Schiavo, a Florida woman who went into a coma after a cardiac arrest. Schiavo’s parents were opposed to her husband’s efforts to disconnect her feeding tube and allow her to die after 15 years in a vegetative state.
The husband ultimately prevailed in court, and Terri Schiavo died in 2005. Pavone was an advocate on behalf of Schiavo’s parents and was at her bedside as she was dying, according to the Priests for Life website.
According to the National Institutes of Health, Leigh’s disease is an extremely rare inherited neurometabolic disorder that strikes the central nervous system and ultimately kills its victims by impairing their respiratory and kidney function.
Editing by James B. Kelleher and Greg McCune