A night of fun and superheroes for children with serious medical - myfoxcarolinas.com

A night of fun and superheroes for children with serious medical conditions

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WASHINGTON -

A group of very special kids are in Washington D.C. Tuesday night for an important cause. They are heading to Capitol Hill Wednesday to speak with lawmakers about children's health care. But first, they got to have some fun.

The JW Marriott hotel hosted an event which was put on by the Children's Hospital Association. The theme of the event: “Every hero needs a hero.”

These children deal with a slew of life-threatening and long-term chronic illnesses. Despite this, they showed to us that their spirits are just amazing.

It was a night of dinner and dancing with superheroes. About 30 children with complex medical conditions and their families gathered for this special night.

But it was very clear who the true heroes are. From heart transplants to sickle cell to cancer, these brave little ones have battled for their lives.

“They're having fun and running around, going crazy, acting like any other child,” said Sandra Ennis, whose son had a heart transplant. “It's important to them to be around other kids that are just like them and to realize they're not alone.”

But it's not just about the party. They have actually come from across the country to talk with members of Congress.

“Shaking hands and kissing babies pretty much,” said Zion Thomas, who is living with sickle cell anemia.

The families are heading to Capitol Hill on Wednesday to show their state lawmakers face to face that a bill called the Advancing Care for Exceptional Kids Act could really make a difference.

“People say bone marrow transplants may be the next cure for sickle cell, so we’ll see what they can do to raise money,” Thomas said.

“One of the challenges with children’s health care is 50 different flavors of Medicaid,” said Jim Kaufman of the Children’s Hospital Association. “So what we’re trying to do is create more consistency in the Medicaid program so we can actually improve the care, improve the quality and save money in this population.”

Maryland mother Katherine Coleman said her 3-year-old child Johnny, who has spina bifida, is the perfect example of why special care and equipment made for kids are so important.

“Our insurance company actually denied his wheelchair,” said Coleman. “They said he didn’t need one even though he can’t walk, paralyzed from the hips down. So they were amazing at helping get us through that, get the appeal and get him his wheelchair, which he just loves and does pretty well with.”

“You see kids here today with feeding tubes and ventilators, wheelchairs that were custom built for them, having fun dancing with a band, doing facepainting, playing with musicians,” said Kaufman. “They’re being kids and that's what the Children's Hospital wants to make sure of. Kids have fun and they thrive and grow into tomorrow.”

The bill was just introduced in the House on Friday. Organizers say many of the country's sickest children have to cross state lines for the medical care they need and they would like to see that improved.

Some of the kids toured the U.S. Capitol Tuesday and we were told one lawmaker was moved to tears by a little boy's story, so it sounds like a real life hero is already having an impact.

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