An unusual illness that makes eating nearly impossible for kids with this condition, the only answer is a costly formula. But insurance companies say they won't cover the cost.

Four year old Nate Ladeur is confident about his long shots, but his mother worries that he won't be able to stay in the game because Nate has a problem.

Debbie Ladeur Nate’s Mother says, "It's a natural thing to want to eat. And when someone doesn't want to eat or they're not eating and you don't know why."

That was four year old Nate's problem. So Debbie Ladeur took him to the doctor and found that he had a rare, very severe food allergy. Now the only thing keeping him alive, the only thing Nate can eat is this formula.

Debbie Ladeur says, "Children's Memorial had diagnosed him as failure to thrive. And he was twenty four pounds, and now he's thirty nine pounds and it's all because of this formula."

But Debbie's insurance company won't pay the thousand dollar monthly bill for formula. Aetna says what Nate eats isn't a drug it's a medical food and that isn't covered so even though it's the only nutrition Nate's system can absorb, and he'd die without it.

Debbie Ladeur says, "Them still saying to me, you can send us things all you want but we won't cover it."

It's the same battle Jori Kodroff faces. She's eaten nothing but the formula for the last year and that's thousands of dollars the Kodroffs have spent to keep their daughter alive.

NBC Reporter Nesita Kwan says, "We talked to Aetna and Blue Cross Blue Shield, and both companies agree the formula is only covered if patients get it through a feeding tube. But people with the allergies say it makes no sense to get unnecessary surgery, just to get coverage."

Ellyn Kodroff Jori’s Mother says, "Why would you want to spend all that money on hospitalizing her. I said, "You want me to drill a hole through my daughter's stomach when she doesn't need to have that done?"

Now the Ladeurs and the Kodroffs frustrating battle has captured the attention of State Legislator Elizabeth Coulson.

State Representative Elizabeth Coulson, Republican, 17th District, III says, "It's very important to realize that children with these diseases need nutrition, and the only way they can get nutrition is through most of these formulas."

She's introduced legislation requiring insurance companies to cover all formula costs a law that's already on the books in six other states.

In the meantime, Nate's spider juice, as he calls it takes a bite out of the family budget, but there are no other options.

Nate Ladeur says, "It makes me strong."