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The family of a Monroe area boy declared brain dead at C.S. Mott Children's Hospital last month following an asthma attack has been given until Tuesday to find medical help elsewhere or face disconnection of his life support.

The University of Michigan children's hospital planned to remove Bobby Reyes from life support on Friday. But the family obtained an emergency restraining order to keep the boy alive at least until a hearing can take place Tuesday at Washtenaw County Trial Court in Ann Arbor. 

"They are extremely religious people, they want him to live and they want to give him a chance," Ann Arbor attorney Bill Amadeo said of Sara Jones and Jose Reyes, the boy's parents. "They are praying all the time." 

The parents were not able to speak with The Detroit News Friday because they were overcome with exhaustion, Amadeo said. 

The 14-year-old was watching video games at home on Sept. 23 when he suffered his first-ever asthma attack, the attorney said. His mother quickly sought help from a fire station across the street from their home, but paramedics were unable to revive Bobby and he was airlifted to the Ann Arbor hospital. 

Mary Masson, director of public relations for Michigan Medicine, UM's health care system, said she couldn't comment specifically on Bobby's case for privacy reasons. 

"Families facing situations involving determination of brain death face unfathomable heartbreak," Masson said in an email to The Detroit News. "All of us empathize with the extraordinarily emotional process that families facing such matters go through.

"Our multidisciplinary teams, including ethics experts, study every case individually. If extensive testing shows there is irreversible cessation of all brain functions, including the brain stem, continuing medical interventions is inappropriate and violates the professional standards of Michigan Medicine."

Masson added: "If another facility provides technology or services not available at Michigan Medicine — and the facility will accept the patient — our team will work diligently to facilitate a transfer."

But Amadeo said the hospital has "not been the most accommodating on giving this kid time."

The family's hopes were dashed last week when an Arizona hospital denied Bobby admission after two doctors there had agreed to treat the boy, the attorney said. 

Allegiant Healthcare, which has a dedicated unit for around-the-clock respiratory care, decided against accepting the boy after re-reviewing his medical records. The hospital is designed for respiratory patients that require the use of a ventilator or tracheostomy and are in need of long-tern, chronic care to achieve the highest level of independence possible, according to the hospital's website.

According to a timeline laid out by the attorney, Michigan Medicine moved quickly after the child was declared brain dead on Sept. 26. The hospital planned to discontinue life support on Sept. 27, but the action was delayed when attorneys filed for a restraining order the same day.

Washtenaw County Trial Court Judge David Schwartz issued a restraining order on Sept. 30 to give the family time to search for alternative care. That order expired Friday, and the hospital planned to discontinue life support.

Swartz on Friday ordered that life support continue until at least until Tuesday's hearing. 

Reyes' parents are right to question the boy's diagnosis of brain death, said Rita Marker, executive director the Steubenville, Ohio-based Patient Rights Council, an international group that opposes physician-prescribed suicide and euthanasia, or the killing of patients to end suffering. 

"You can be declared brain dead on one floor (of a hospital), and not on another floor, because different people are making the decisions based on different criteria," Marker said. 

"There are some people who are not going to recover at all, but are not brain dead," she added, noting the case of Jahi McMath, a 13-year-old California girl declared brain dead after complications from a tonsillectomy. 

In the California case, the family ultimately moved the girl to New Jersey, which Marker said is the only state in the country that doesn't recognize diagnoses of brain death. 

"It's very important for the parents to get a second opinion," Marker said, noting that the diagnosis can become a critical issue for continued health insurance coverage in such cases. 

Hospitals vary in their willingness to accommodate families whose loved ones have been declared brain dead, she said.

"It varies from hospital to hospital, even from doctor to doctor," Marker said. "And it is really problematic. 

"The parents are looking out for their son, and if the hospital doesn’t want to keep their son, they should give the parents time to transfer their child." 

A GoFundMe for Bobby started by family members has raised $21,000 of a $30,000 goal as of Friday afternoon. 

kbouffard@detroitnews.com

Twitter: @kbouffardDN

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