Amelia Marohn, of North Tonawanda, had her first of three open-heart surgeries when she was just six days old.
Almost four years and a couple million dollars worth of surgeries later, the little girl will celebrate her fourth birthday on Monday when doctors, at the time she was diagnosed with a rare heart condition, said she wouldn’t make it.
The surgery was performed in Boston March 20.
A request to hold a block party near the family’s home, to celebrate the occasion, was granted by the North Tonawanda Common Council Tuesday. Barricades will be put in place from 263 Miller St. to the corner of Miller and Payne Avenue from noon to 6 p.m. Sunday.
Nikole Marohn, Amelia’s mother, admitted the only way the event in support of her daughter could be realized is through the support of her family, friends, neighbors and others at Amherst Baptist Church, where the family worships.
“(The church) has been an absolutely incredible support through this. It’s like a huge family,” Marohn said.
Amelia was born with hypo-plastic left heart syndrome, which means the three surgeries — two in Cleveland, Ohio and the last at Boston Children’s Hospital — were needed to repair that part of her heart.
“She was basically born with half a heart,” Nikole said. “The doctors said she would not live, so hence the celebration. She’ll be four.”
But even as the little girl got ready to attend a dance recital produced by Sherry Martin School of Dance in Williamsville, where she is a student, her mother said her daughter’s future health still isn’t entirely clear.
And for that matter, neither is the question of how to pay for the necessary treatment.
The church raised a few thousand, then there has been support of friends who have helped with groceries and donated gas cards for long trips to and from the hospitals.
But given the condition, Amelia can never rule out future procedures.
“We are praying her right ventricle holds up and if it does not, we’re looking at a transplant.”
The bill for Amelia’s first surgery in 2004 came to $986,000, and the stay-at-home mom and her husband Jeryl, who works at Dunlop on River Road in North Tonawanda, still aren’t sure how they’ll pay.
The family has insurance, but only the latest of the three related surgeries (part of the same process to repair Amelia’s heart) was covered under the plan.
And then there’s the question of the child’s lifetime dependence on aspirin and blood-pressure medications.
“Our doctor has had to battle tooth and nail to get the third surgery covered. We will take our daughter to the world’s best surgeon, even if we had to go to Japan — you shouldn’t have to be told by your insurance company “no” when you feel you should have taken (your child) to a specific surgeon,” Nikole said. “You can’t worry about (cost) you have to do what you have to do.”
Besides, she said, there’s nobody in the Buffalo area that can do the surgery. The next closest place is in Rochester, but not necessarily the best when a rare condition is involved.
For the latest surgery, the family sought the help of Dr. Pedro Delnido, who the family said is one of the best surgeons in the country in treating the rare disease.
They are asking those invited to the party to bring a dish to pass. There will be a “bounce house” for the kids.
Nikole said she and her husband are looking into starting a charitable 5K run to raise money for others in a similar position.
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