GRAND RAPIDS, Mich. (WOOD) — Six-week-old Jonah, born with a deadly heart defect and denied a potentially life-saving operation by a local health insurer and hospitals, is now at an Ohio hospital where the surgery will be performed.
Jonah’s mom, Heather Puruleski, has not been back to the family’s home in Kentwood in nearly two months. During that time, she has been fighting with the health insurance company and the hospitals to get Jonah to Columbus, where doctors will perform a surgery they believe will keep Jonah alive.
“We’re just very blessed and thankful to be here,” Puruleski told 24 Hour News 8 via Facetime on Friday. “Thankful for the days coming soon on Monday. Ready to get Jonah closer to being home.
Jonah was born April 26 weighing 3 pounds, 12 ounces and diagnosed Trisomy 18 or Edwards Disease, a rare and usually deadly condition. It’s caused by 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.
Jonah has been at the C.S. Mott Children Hospital at the University of Michigan in Ann Arbor since birth. That hospital refused to do the surgery, telling Jonah’s parents it’s too risky and may not be effective.
But Greg and Heather Puruleski believe the surgery could give their son a chance at a longer life.
“(We’re hoping) that Jonah is able to grow and come home with us and we’re able to grow and interact with our kids, our family, our friends — just watch him grow at a place other than in the hospital,” Heather Puruleski said.
She and her husband discovered that doctors at Nationwide Children’s Hospital at Ohio State University would do the surgery. However, their health insurer, Priority Health, would not pay for the surgery, citing the decision of the doctors at Mott.
The family received good news after Rockford resident Tom Lockhart saw their story on 24 Hour News 8 and donated $39,000 needed just to transport Jonah to Ohio.
Then came more bad news when Helen DeVos Children’s Hospital, which is owned by the same corporation that owns Priority, refused to provide local post-operative care, which was a condition for Nationwide to do the surgery.
But over the past few days, the Puruleskis have gotten the OK from U of M to get post-operative care and even more importantly, they have been able to secure insurance through the Michigan Department of Community Health that will defray some of the massive costs of Jonah’s care.
The time away has been hard on Heather Puruleski, who has had to be away from her husband and two older children as she fights for Jonah’s life. Jonah’s aunt and uncle — Michelle and Scott Cooke — have seen mother and son many times in Ann Arbor and have witnessed the struggle.
“Jonah has touched so many lives, thousands, and they’ve just seen a lot of love and a lot of support,” Michelle Cooke said. “I’ve never seen anything like it. You see it on TV all the time, but I’ve never experienced it so I think that’s what gets them through.”
“Just waking up every day and seeing his eyes looking at her. It gives her a reason to fight every day,” Scott Cooke added.
The surgery is scheduled for 8 a.m. Monday.
“We absolutely hope and believe that Jonah’s going to defy the odds and that he will live for a long time with us,” Heather Puruleski said.
—Online:Jonah Puruleski’s GoFundMe pageTrisomy 18 Foundation