AUSTIN, Texas - 2-year-old Apollo Howell has spent much of his young life in the operating room and receiving ongoing medical care.
"Apollo has something called an esophageal atresia which is a gap between his esophagus and his stomach and a tracheal esophageal achalasia which is a connection or a hole in his airway," Kate Howell said.
Apollo's particular situation is rare and his parents Robert and Kate Howell said it became life threatening. But recently he's made huge improvements. They call their son a success story.
The Howell's do have insurance as well. But both the Howells and Dr. Mark Shen, President of Dell Children's Health agree without Medicaid, Apollo would have a very different life right now.
"I think without the ability to provide care and to pay for some of the most complex surgeries that we can do today in medicine, Apollo would not be as healthy as he is today and might not be around because of the significance of some of these surgeries," Shen said.
"Raising a kid with medical needs is a very, very steep climb in the best of circumstances and so when we say Medicaid is like the handholds that you're using to scale up and get your kids to help without those, there's nothing below, there's no safety net once those supports get pulled out, you just fall off the cliff," Robert said.
Seton Healthcare said the Howells qualify for Medicaid through a Texas program that covers children with chronic conditions. But the current GOP health care reform in Washington could cut more than $43 billion in children's Medicaid funding over the next 10 years.
On Tuesday, the Howells along with Dr. Shen will fly to the nation's capitol to meet with lawmakers like Senators Ted Cruz and John Cornyn and Congressman Roger Williams. The visit is part of the Children's Hospital Association's Annual Family Advocacy Day more than 40 families from around the country will be doing the same.
"Can we give a different point of view that maybe gives a different perspective that they haven't heard yet? And to put a real face on some of the people that have actually benefited from this," Robert said.
The Howells are concerned about making the cross-country trip with Apollo. But they said their Austin doctors won't be out of reach.
"Even as we prepare to go to DC which is very scary, they're going to be a phone call away to help us get whatever care we need...and that's what Medicaid can do," Kate Howell said.