Canadian boy who was treated in U.S. dies in Ontario
A 20-month-old Canadian boy with an incurable neurological disorder whose life was extended in the U.S. after a Canadian hospital declined further treatment, has died at his Ontario home, a family spokesman said on Wednesday.
A Canadian hospital where the boy, known as “Baby Joseph,” 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.
But the baby, Joseph Maraachli, 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, said, “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.
Who has right to tell Baby Joseph to die?
Joseph’s parents know the disease well. They lost an 18-month-old child to the same disease eight years ago. They felt a tracheotomy would help Baby Joseph live another six months and then die at home, as it had done for their other child.
But doctors at London Health Sciences Centre in Ontario, who treated Baby Joseph since October, felt he was in a permanent vegetative state and that his condition was deteriorating.
The family disagreed.
“This is a baby that when his father was talking to him on one side of the room he’d look to his father, and when his mother spoke he’d look to her,” said O’Donnell, who also said he has seen the child throw temper tantrums when, for example, he gets changed when he doesn’t want to.
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 web site.
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.
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By Bruce Olson
ST. LOUIS