KENTWOOD, Mich. (WOOD) — A Kentwood couple says their newborn son’s survival may hinge on a surgery their insurance company refuses to cover.

Jonah Michael Puruleski weighed just 3 pounds and 12 ounces when he was born April 26. But within that tiny body was a devastating condition known as either Trisomy 18 or Edwards Syndrome.

Jonah has an extra chromosome – something that happens in one out of 6,000 live births. In Jonah’s case it has resulted in severe heart defects.

“This is Jonah,” said mom Heather, showing off the tiny baby in her arms via FaceTime from C.S. Mott Children’s Hospital at the University of Michigan in Ann Arbor.

Jonah has spent his entire life in intensive care. His mother stays by his side while dad Greg cares for their three other children at home in Kentwood.

The prognosis is grim. Few infants with Trisomy 18 survive beyond early childhood. While there is a surgery that could help, doctors at U of M have told the Puruleskis the risk outweighs the potential benefit and they will not do it.

“It’s a very risky surgery. But we have someone in Columbus, Ohio – at Nationwide (Children’s Hospital) – that is actually willing to do the surgery and wants to get Jonah there now,” Greg Puruleski said.

Now the Puruleskis are facing another roadblock. Their insurance through Priority Health will not pay for the procedure because the surgery is out of the state.

“As a mother, to think that an insurance company is going to tell me whether my child is going to live or not… It’s really hard to grasp that this one little hurdle could prevent us from taking him home,” said Heather.

The Ohio State University hospital has told the Puruleskis that time is of the essence. But Heather says Priority Health has rejected their appeal and now they are left with few options.

“If (Priority Health) would just hold Jonah and see the fight that we’ve put up since the day we got the diagnosis. It’s just been a constant, constant battle for everything for him,” Heather said.

Even if he has a successful surgery, Jonah would likely require more surgeries after the age of 1.

There is hope for the Puruleskis: some children with Trisomy 18 have survived a decade or longer.

“I do a lot of praying and talking to the doctors and the nurses and hoping that somehow we can change their mind,” Heather said. “I’m hoping that it is possible. I’d like to take my son home.”

Jonah’s parents say even if he only survives a short time, they want him to breathe at home, be with his siblings and experience love for as long as possible.

“I just… please. I beg the insurance company to please help out with us because this is very important to my family and I,” Greg said.

Even though the family agreed to waive their confidentiality and Greg Puruleski offered to talk to a Priority Health representative on a conference call with 24 Hour News 8, the health care provider declined to comment on the case, citing privacy concerns.

“Our hearts certainly goes out to the family during this difficult time,” the spokesperson said.

Supporters have created a GoFundMe page for Jonah, if insurance does not come into play. So far, organizers have raised about $6,800 toward the goal of $50,000 to cover his medical expenses.

Online:Jonah Puruleski’s GoFundMe pageTrisomy 18 Foundation