Canadian child at center of end-of-life debate dies at home

ST. LOUIS — A Canadian boy whose family’s struggle to keep him alive despite overwhelming odds spurred an international end-of-life debate has died about four months before his second birthday, a family spokesman said Wednesday.

Joseph Maraachli, who became widely known as Baby Joseph, died Tuesday afternoon, according to Brother Paul O’Donnell of St. Paul, Minn., the family’s spokesman and spiritual adviser. He was 20 months old.

Joseph 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 Joseph’s native Ontario refused to perform a tracheotomy to extend his life, saying it was futile because the disease was terminal. An Ontario court decided doctors could remove the child’s breathing tube.

His family sought help from American hospitals. Cardinal Glennon Children’s Hospital in St. Louis agreed to treat Joseph, and he was brought to St. Louis in March. He spent one month at Cardinal Glennon.

“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 anti-abortion and anti-euthanasia organization that flew Baby Joseph to St. Louis, said the child and his parents “fulfilled a special mission from God.” Pavone said the parents “wanted to fulfill their calling to love their child unconditionally and to protect him from those who considered his life worthless.”

A spokeswoman for Cardinal Glennon said the hospital did not immediately have comment. Messages left with London Health Sciences Centre were not returned.

Joseph’s story drew international attention after doctors in Canada determined that he was in a permanent vegetative state and his condition was deteriorating.

When those doctors decided to take him off of assisted breathing, Joseph’s parents, who lost an 18-month-old child to the same disease eight years ago, challenged the hospital’s finding in court but lost. They also began a social media campaign on their son’s behalf.

The “Save Baby Joseph” Facebook page, which has more than 14,000 “likes,” had several messages of condolences on Wednesday.

Maraachli and his wife, Sana Nader, contended that removing their son’s breathing tube would cause him to suffocate and cause him undue suffering, and they sought to compel doctors to give Joseph a tracheotomy that would allow him to breathe through a tube inserted into his throat.

Eventually, Cardinal Glennon agreed to take Joseph, and he seemed to make progress. When the child was released from the hospital in April, O’Donnell said the family was “overjoyed.” Doctors performed a tracheotomy that provided Joseph with increased mobility and comfort while providing a more stable airway. It protected his lungs from inhaled saliva or other material that could cause aspiration pneumonia.

At the time, they said the tracheotomy could extend his life by up to six months — as they say it did for their other child who died — and that it would allow him to die at home.

That proved to be the case. Joseph died six months after the procedure in St. Louis, and he died at the family’s Ontario apartment.

The National Institute of Neurological Disorders and Stroke said Leigh Syndrome, also known as Leigh’s Disease, is a rare inherited neurometabolic disorder that affects the central nervous system. It typically begins before the age of 2 years.

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