Local family of boy with rare heart condition thankful this holiday season

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HAMBURG, N.Y. (WIVB) — Eight-year-old Grant Domagala is a superhero; a seemingly normal child lurking among us — unsuspecting.

The thing is, he’s not supposed to be here. He’s beaten the odds of a rare heart condition time and again.

And like most superheroes, he’s also teaching important lessons. You could say his superpower is gratitude.

“You’re thrown into this world of words, you have absolutely no idea what they mean. It’s very scary. It’s terrible,” said Grant’s mother Jessica Domagala.

But the words have meaning. And until recently, the meaning wasn’t good.

“Tetralogy of fallot, pulmonary atresia,” said Jill Cholette, medical director of the pediatric care center at Golisano Children’s Hospital. “That means that Grant did not have the proper connection from his heart to his lungs.”

Grant also had a hole in an interior wall of his heart. It’s still there today.

The prognosis was dim, terminal.

“We had, I want to say five or six doctors that were saying there’s really nothing that can be done,” Domagala said. “For the most part, they were pretty much saying he was inoperable.”

But doctors in Rochester didn’t just operate. They performed a miracle.

“It’s a big deal. He was critically ill. He was as sick as sick can be,” Cholette said. “These are the most complicated surgeries that are performed, and they’re performed in the most vunerable time in the neonatal period.”

Since that first surgery at just three weeks old, Grant’s had two others. Three of the most complex open heart surgeries, one for every two years of life.

“We said when he was a baby that we’re not giving up until he gives up,” Domagala said. “And that’s exactly what we’ve done.”

Along the way, the Domogalas also learned to appreciate the little things. Be more present.

Sitting around the Thanksgiving table Thursday, they didn’t have too look far to see exactly why they’re thankful.

“Every holiday, every birthday, every milestone, everything, it just means so much more,” Jessica said. “And although I wouldn’t wish this on anyone to constantly almost lose their child, and that fear and pain, at the same time, it gives you an element of appreciation that you don’t normally have.”

In addition to his extraordinary will to live, Grant’s vital organs have performed beyond expectation.

So, naturally, each represents a different superhero.

“My lungs are The Thing,” Grant said. “They’re stiff but they’re tough.”

Another of his boyish powers? A wry humor and quick wit.

Grant will never be fully cured. He’ll need additional surgeries, including the chance of a heart transplant — perhaps sooner rather than later.

For now, though, the Domagalas are choosing to spend the holidays just as they have the past eight years — with nothing but joy in their lives., and hope in their hearts.

“He makes you appreciate things, he makes you feel that way, because he should be lying on the couch, sad, you know,” Domagala said. “His heart is failing. But he’s living. He’s thriving. He’s enjoying life.”
Grant’s family has created a Facebook page to keep people updated on his progress. Click here to visit.

 

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