Imagine a prescription your teen needs to survive, costs over $160,000 a month, listed as one of the most expensive drugs in the market.

That's the reality for a Boardman family, with a 14-year-old student of St. Charles, with a rare disease.

The fluid cost of the medication has left the family scrambling for a necessity Christine Lapotta can't live without.

Lapotta has a rare metabolic disorder called OTC Deficiency. The condition requires management of protein intake or her ammonia and blood levels will rise.

Without her medication, her father, Bob Lapotta, said she would go into a coma and could die.

"The ammonia builds up in the blood, and basically she gets incoherent," he said,  "and falls down to the point where we saw it a couple years ago and had to life-flight her to Akron."

The problem is that Lapotta's medication, Ravicti, costs around $166,000 monthly. Even with insurance, the Lopotta's said they can be stuck paying thousands out of pocket for the prescription, fluctuating each month.

"What if something were to happen to my parents?" Christine said, "Even while I was still a kid, what would happen then? Not many people have this condition to know about it that much."

Christine was diagnosed with the condition when she was two, and managed by using other meds until her condition progressed to the point where they had no other option.

"This medication stabilizes her life and helps the other medications work," Bob Lapotta said, "It's basically the umbrella over everything."

She plays volleyball and basketball, plans to attend Ursuline next year, and hopes to find a solution.

"If we didn't have insurance, I wouldn't be able to get those medicines and I wouldn't be able to live," she said. 

The Lapottas said they utilize just about every resource they can to get the price down, and the challenge is that every month they aren't sure if they're going to receive it or much it's going to cost.

Christine's father said it's turned into a full-time job to ensure she gets the medication when she needs it. 

While they hope to receive help, they said they can't rely on it to come through every month, which causes a lot of stress.

They've tried to resolve the issue by seeking disability benefits through the state for Christine but said they have not been approved and welcome advice from anyone who can help.