Kari and Dan Cheramie’s daughter, Adyson, never made it to her first birthday due to a disease called Neonatal Hemochromatosis or NH.
Recently, the Vancleave couple got an opportunity to help researchers find a way to spot the disease early on. For them, the decision to do it was an easy one.
Dan Cheramie remembers the day Adyson was born, September 19, 2009.
“I think I was probably the happiest father ever that day,” said Dan.
A few days after delivery, her parents learned she had a very rare and deadly condition called Neonatal Hemochromatosis, in which iron accumulates in the liver.
“This was the first case that he has ever heard of. He was just as in shock as we all were as to what to do and what this disease does,” said Kari.
Meanwhile, Adyson worsened. The desperate parents moved their daughter to a hospital in Chicago under the care Dr. Peter Whitington, who specializes in NH. He suggested surgery to close a vessel near her heart.
“He thought that this a big cause for her liver and her other organs not to be functioning properly,” said Kari.
At just three-months-old, Adyson underwent open heart surgery twice. Because of jaundice, her organs were hard to distinguish and the surgeon ended up closing the valve and an artery that led to her lungs. He went in a second time to correct the mistake, and she made vast improvements.
“We felt like she had beat the odds at that point,” Dan said.
But a few days later, things took a turn for the worse. Adyson’s kidneys were shutting down.
“Dr. Romero actually started crying and I think that’s the point I knew, wow, this is serious,” Dan said.
A few weeks later, the doctor gave them the devastating prognosis – Adyson wasn’t going to make it.
“You’re a mom. You’re supposed to take care of your kids. And you’re supposed to be able to help them whenever they are hurt or sick. So that’s why I researched as much as I could,” Kari said.
Adyson took her final breath on January 22, 2010. She was only four-months-old.
Recently, the Cheramies have been asked to take part in a study that could help pinpoint the disease early so mothers can begin treatment to keep it from affecting their child.
“We could help and just do our part to save one child, or hundreds of children and to help parents not face what we face. It’s worth it,” Dan said.
Kari has three other children. One before Adyson didn’t contract the disease. But following Adyson, Kari had to undergo IVIG therapy to keep Kari’s anti-bodies from attacking the livers of her last two children.
On Tuesday, September 19, Adyson would have been 8-years-old. Her family still celebrates her birthday each year.
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