This is an archived article that was published on sltrib.com in 2015, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.
Tony Stark and Tony Nielson, a baby boy in Lewiston, share more than a name.
Stark, the "Iron Man" comic book character, was forced to install an experimental device to his heart to keep shrapnel from killing him. And Tony, at only 10 months old, needs an experimental heart surgery to avoid life-threatening risks.
But unlike Stark, his family doesn't have a massive fortune to pay for a surgery that their insurance might not cover.
"We're not sure yet," said Tony's mother Maquel Nielson. "We haven't talked to [the insurance company] yet, they may cover it. They have covered it for other families before."
Either way, the family has medical expenses to consider. So their friends are throwing the Nielsons a fundraiser on April 10 to help pay for them, with a goal of collecting about $20,000. Fittingly, the event is Iron Man themed.
"Because Iron Man's name is Tony, so we started calling him Little Baby Iron Man," said family friend Lana McKee.
The fundraiser includes a benefit dinner, with tickets available for one of three sessions — at 6 p.m., 7 p.m. and 8 p.m. — at the American West Heritage Center in Wellsville. The event also features a hayride and silent auction, which includes prizes like an overnight stay at La Caille's cottage and several Utah Jazz gifts.
Tony seemed happy and healthy when he was born in May. But within 24 hours, the boy's pediatrician noticed that his heart sounded a little off, according to a website about the fundraiser.
Multiple problems forced Tony to spend the next three months in heart failure, becoming too weak to eat. He had his first open-heart surgery in September to fix most of the issues.
Tony began to thrive through the autumn; but in early January, he relapsed into heart failure. A leak in his mitral valve had grown, "and he now has severe regurgitation," according to the website. "The valve needs to be replaced very soon."
He has two options, but both have unique complications. The first is a mechanical valve, a procedure that's been done many times.
"However, this option would require Tony to take a very heavy blood thinner for the rest of his life. This would put him at a high risk for blood clots and stroke as well as excessive bleeding and bruising with any injury," according to the website. The option also means a lot more open-heart surgeries, which can become increasingly risky, since the valve would need replacing as he grows up, the website adds.
His doctors at Primary Children's Hospital suggest the conventional method, but the Nielsons feel his second option is the right choice.
It's an experimental procedure that's only been performed on about 30 children, Maquel Nielson said. Instead of a machine, Tony's heart would be fixed with a modified, stented bovine jugular — which would both eliminate the need for blood thinners and cut down on the number of surgeries he would need. Since the procedure only started three years ago, though, the long term effects remain a mystery.
The experimental procedure also means that Tony's family would fly him to Boston Children's Hospital for it within a month, since a doctor there has the most experience with the surgery.
"He has done about 25 of these," Macquel Nielson said. The procedure's been performed once at Primary Children's Hospital, and though initially successful, the child ultimately died, she said.
At the end of the third "Iron Man" movie, Stark undergoes surgery to remove the shrapnel around his heart; a happy ending. Tony's parents hope their son can enjoy the same.
"He's hanging in there," Macquel Nielson said. "He's tired. But he's pretty tough."
Anyone who would rather forgo the benefit dinner and only bid in the silent auction can do so for $5. Besides the fundraiser, people can also donate online at tonytough.myevent.com. The Lewiston State Bank is also accepting donations to the Tony Tough account.
Twitter: @mikeypand —
Tony Tough Fundraiser
P The April 10 fundraiser is scheduled from 6 p.m. to 9 p.m. at the American West Heritage Center (4025 S. U.S. Highway 89-91). Tickets for one of the three dining sessions, scheduled for 6 p.m., 7 p.m. and 8 p.m. and more information are available at: tonytough.myevent.com.