Locals come together to support Grand Lake man in battle with rare disease | SkyHiNews.com

Locals come together to support Grand Lake man in battle with rare disease

Dealing with a rare medical conditions is never easy, or cheap, as the Bozsan family of Grand Lake has discovered over the past few months.

Throw in coverage denials from insurance providers and a difficult situation can quickly become dire. But thanks to the generosity of local citizens and complete strangers, there might be a light at the end of the family's long tunnel.

The whole ordeal for the Bozsans began in early October, when husband and father of one, Joshua Bozsan, 38, began to experience difficulty swallowing food.

The Bozsans came to realize Joshua's throat was gradually starting to close up.

"We would be sitting on the couch and he would say the sides of his throat were touching," said Maureen Bozsan, Joshua's wife. "His throat was so small, it would close up."

They began seeing regional doctors and medical specialists, ultimately leading to Joshua's diagnosis of a rare medical condition called eosinophilic esophagitis, also known as EoE. Joshua's medical ailment is a type of allergic inflammatory condition of the esophagus involving a specific type of white blood cell.

While the impacts of EoE can vary in severity, Joshua has been experiencing a severe case.

The opening in Joshua's throat has been measured as small as four millimeters, according to Maureen. The size of his throat requires Joshua survive on a liquid-only diet as he works to overcome his ailment, all while precipitously losing weight.

To treat his condition, doctors recommended an elimination diet, to try and pinpoint any foods that he might be having an allergic reaction to, and that Joshua take a prescribed protein pump inhibitor for six to eight weeks. Because his case is so severe, doctors also called for procedures to dilate his esophagus and widen the space in his throat.

He has already undergone throat dilations, but doctors have recommended he undergo the procedure at least three more times, which cost just under $10,000 each.

The Bozsans' insurance company, unfortunately, is now denying any future throat dilations, arguing the procedures are elective, and has also denied future payments for his medications, which cost the family $104 per day, according to Maureen.

The Bozsans estimate they are facing out of pocket costs of roughly $40,000 to complete Joshua's treatments.

"He has lost all this weight, he doesn't have any more to lose," Maureen said. "Now we have to come up with the money for the procedures; there is no other option that works."

The consequences of Joshua's condition are visually apparent.

Joshua, who is a general contractor, is five feet, 10 inches tall and, over the past four months, he has lost over 80 pounds from his already svelte frame. He now weighs a bit less than 150 pounds.

"This has been pretty brutal," Joshua said. "Most people would probably think the insurance is the largest part of the problem, but the lack of eating is probably the biggest test of my inner strength. Eating and chewing is something we all take for granted. That is the roughest part."

Despite their hardships though, both Maureen and Joshua have positive attitudes and thankful hearts.

"The extreme generosity and kindness from people we don't know has given us so much hope," Maureen said. "If it wasn't for people we don't know who are helping us, I don't know where we would be."

Over $8,000 has already been raised for the Bozsans since Joshua's GoFundMe page was created on Jan. 9.

Joshua echoed her sentiments.

"You never really know what kind of friends you have until you go through something like this," he said. "We have just been overwhelmed by the amount of support we have gotten."

Joshua also said that he hopes anyone who reads this story who has been diagnosed with eosinophilic esophagitis, or has a child who has been diagnosed with the condition, will reach out online to the broader EoE community.

"It is hard to find information on it," he said. "But there are a lot of people out there with a wealth of knowledge if you know how to ask the right questions."

How you can help

If you are interested in helping the Bozsan family with their financial hardship related to Joshua Bozsan’s ongoing medical procedures, you can visit their GoFundMe page by searching for Joshua Bozsan. You can also check them out on Facebook under the page name Please Save Joshua.