Baby Joseph Maraachli Passes Away, Parents Fought for Life

International   |   Steven Ertelt   |   Sep 28, 2011   |   9:01AM   |   Windsor, Canada

Baby Joseph Maraachli, the infant whose parents had to stage an international battle with a Canadian hospital to have a tracheotomy to help him breathe as he suffered from a rare medical condition that would eventually take his life, has died.

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Joseph’s parents wanted him to have the medical procedure done in the same way their daughter had one before she passed away. Joseph finally got one after Father Frank Pavone of Priests for Life intervened and helped arrange the procedure at a Catholic hospital in the United States.

Doctors at SSM Cardinal Glennon Children’s Medical Center in St. Louis performed the tracheotomy on March 21 and, in a follow-up statement, deemed the procedure “medically appropriate” after a thorough examination of the then-15-month-old boy who a Canadian hospital refused to help.

Pavone, whose organization Priests for Life provided the financial and logistical support for bringing Joseph and his family to the United States, informed LifeNews.com Joseph has passed away.

“I learned with sadness tonight of the passing of Baby Joseph, and extend my prayers to his family,” Pavone 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.”

“From my first conversation with Baby Joseph’s parents, they expressed to me their trust in God. They had no demands of Him regarding how long their son would live. They just wanted to fulfill their calling to love their child unconditionally and to protect him from those who considered his life worthless,” Pavone added.

“I praise God tonight for the tens of thousands who stood with Priests for Life and other prolife groups to save Baby Joseph. We remain convinced that the value of life is not measured in months or years, but rather reflected in the love we share moment by moment. We all loved Joseph, because God entrusts us to the care of each other. In that conviction we will continue to counteract the culture of death and restore protection and equality to all, born and unborn,” he continued.

“Our mission to save Baby Joseph and help his family was never based on any prediction of the future, but rather on the value of his life here and now,” Priests for Life director Father Frank Pavone said. “Our critics, on the other hand, looking into the crystal ball that ‘right to die’ advocates seem to always think they have, claimed our intervention was futile because Joseph would only end up having a machine do his breathing for him.

“We don’t have to answer their criticism; Joseph is doing that for us, with every breath he takes. He has gained benefit from his tracheotomy, is breathing on his own, and is going home to live with his parents, who will love and care for him for as much time as God gives them together,” Pavone continued. “Baby Joseph’s victory over the culture of death is especially powerful now, as we prepare for Easter, a time when Christians everywhere celebrate Jesus’ victory over death.

Bobby Schindler, the brother of Terri Schiavo and co-director of the Terri Schiavo Life & Hope Network that helps disabled people like Terri and Joseph receive appropriate medical care, also commented to LifeNews on Baby Jospeh’s passing. Like Pavone, the Schindler family was instrumental in helping Joseph’s parents obtain the tracheotomy to allow him to breathe easier. Schindler traveled to London, Ontario on two occasions to join the family of Baby Joseph.

“It was a privilege and an inspiration for me to meet the Maraachli family and see their dedication to care for and love their precious boy, regardless of his disability,” said Schindler. “All the parents wanted was to bring their baby home. By their example, they showed the world what it means to love unconditionally. May we all learn from their example.”

Brother Paul O’Donnell was active in helping Joseph and his family and he told LifeNews.com previously about his experience.

“I was privileged to be one of the first American supporters of Baby Joseph and the Maraachli family. We assembled a team of pro-life and anti-euthanasia leaders and mounted a grass roots campaign to have Baby Joseph transferred to a hospital in the U.S,” O’Donnell recalled. “Baby Joseph remains a sick little boy and his time on earth may indeed be short. However, when he eventually dies, it will be God who decides when and not the courts and doctors. Now this little one will have precious time with his family, surrounded by love.”

Shortly after the procedure, Joseph was baptized and his parents said they were pleased with the developments.

At the time of the procedure, Moe Maraachli, Joseph’s father, commented:  “It’s a miracle.  My son now has freedom.  I’m very happy.  My wife and I will respect the second opinion from the hospital in St. Louis. We will accept it with all my heart because Joseph got his human right to get a chance to get a second opinion.  When God wants to take his life He’ll take it and nobody can say ‘No’ to God.”

Joseph suffered from Leigh Syndrome, a rare genetic neurometabolic disorder. Leigh’s disease, also known as Subacute Necrotizing Encephalomyelopathy (SNEM), is a rare neurometabolic disorder that affects the central nervous system and it is named for Denis Archibald Leigh, a British psychiatrist who first described the condition in 1951.

The condition typically affects infants between the age of three months and two years and mutations in the mitochondrial DNA or the nuclear DNA cause degradation of motor skills and eventually death. Crucial cells in the brain stem have mutated mtDNA and this causes a chronic lack of energy in the cells which adversely affects the  central nervous system and inhibits motor functions. There is currently no cure for the disease and infants like Joseph rarely live longer than two or three years after the onset of the disease.