The family of Zachary Bisiar, the 16-year-old with cerebral palsy who died of a heart attack on board a Delta flight last weekend, has launched a fundraising campaign to help defray the costs of the teen's funeral after a bogus appeal appeared online.
The teen's uncle, Steven Leahy, said his sister Toni Rolando is "devastated" by the loss of her son and was horrified to run across an unauthorized news video of the tragedy asking for cash.
"We saw a YouTube video showing a CNN report and it had a donation button at the bottom that looked like someone was using the tragedy to get money," said Leahy, 40, who lives in Sugar Hill, Ga. "The thought that someone would try to get some financial gain off this really upset me."
So Leahy, an IT specialist, decided to set up his own fundraising campaign on gofundme.com and hopes to raise $15,000 to help offset funeral costs and to help his sister and her husband.
The family was in the middle of a move from Ft. Lewis, Wash., to Ft. Stewart, Ga., where Charlie Rolando, the boy's stepfather, was being stationed. A quartermaster in the U.S. Army, Rolando was with one of the last units to pull out of Iraq.
"I used to be in the military and I know what limited pay you get," said Leahy. "There is the cost for the move. My brother-in-law was driving the car and bringing all their household necessities, and there was gas and lodging across country, then the tragedy hit."
"If people donate, I want it to go to something good," he said.
Zachary had both physical and mental deficits and had some difficulty talking, according to his uncle. "But he was able to do a lot of things and could ride a special bike," said Leahy. "He was also able to walk with a walker."
Zachary was flying with his mother, grandmother and 14-year-old brother Teran Bisiar on Delta flight 128 from Seattle to Atlanta when, 30 minutes into the trip, he went into cardiac arrest. The plane was diverted and landed in Spokane.
The teen had been cleared by doctors to fly, but Leahy said there had been some discussion over whether to fly or drive across country.
"They read about another child with a condition like his who drove across country and had a lot of issues in the car and got a blood clot," he said. "So they made the decision to fly."
"There were no heart issues," said Leahy. "They had visited the doctor because there was concern he would get a panic attack, because he had never flown before. They were asking about Valium or Ambien so he could sleep and relax, but the doctor worried that his heart rate would be too low."
The medical examiner in Washington's Spokane County is awaiting further tests of an autopsy before determining the teen's cause of death. Forensic pathologist Sally S. Aiken said in a statement this week that the death was "thought to be a rare complication of a rare disease process. The manner of death is natural."
One medical expert who has not treated Zachary said there was likely no connection between the heart attack and the cerebral palsy.
"Not knowing the details, I think it's probably unrelated," said Dr. James Blackman, a pediatrician and medical advisor for the New Jersey-based Cerebral Palsy International Research Foundation.
"Cerebral palsy is a pretty broad condition where there is injury to the brain and it affects primarily muscle control and movement," said Blackman. "There can be co-morbidities and a variety of other problems with cognition and communication, but not necessarily heart problems.
"If the family was unaware the child had any congenital heart defects, then an autopsy may find something unrecognized, but not directly related," he said.
An estimated 800,000 to 1 million Americans are living with cerebral palsy, according to Blackman. It is caused by an injury sustained during a pregnancy, the birth process or after a head injury or stroke when a young child's brain is starved of oxygen.
"This kind of heart problem can happen out of the blue to any child -- at a Little League game when someone is totally well," he said. "This was a special child, for sure. To think his sibling was on the plane, as well, it must have been a rough ride for everyone on the plane, especially the family."
Volunteers sprang into action when Zachary's heart began to fail, according to passenger volunteers.
Dan Goslin, a registered nurse, said that he, a doctor and a midwife helped the airline crew, as they attempted to resuscitate Zachary.
"He was having trouble breathing. We tried oxygen," he told ABC affiliate WSBTV. "That didn't work. We tried to move him out of the chair and get him to another position. That didn't work and everything we tried just really didn't work."
The flight was met by emergency paramedics who also tried successfully to revive the teen.
Leahy, who's organizing the gofundme campaign, said Delta Airlines "went above and beyond to assist in saving Zach's life."
Zachary's body has already been returned to Georgia and a funeral has been scheduled for Dec. 22, according to Leahy. He said his sister and her family were en route, driving by car to Georgia.
"He was a great kid, full of life and fun to be around," Leahy said of his nephew. "We just related to him like a normal kid."