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Right-to-live toddler dies at home

A terminally-ill boy whose family's struggle to keep him alive despite overwhelming odds spurred an international end-of-life debate has died aged 20 months.

Joseph Maraachli suffered from the progressive neurological disease Leigh Syndrome.

A family spokesman 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.

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 taken there in March.

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.

Mr 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.

Joseph died six months after the procedure in St. Louis, and he died at the family's Ontario apartment.

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 two.


From Belfast Telegraph