Update at 1:15pm, July 10:  Omnipure Filter Company just issued this response to the Stockdale family's final appeal to approve the necessary surgery.  Omnipure President Roger Reid says "This is a very difficult situation for Ryan and his family and they have our profound sympathy and best wishes.  We are committed to doing the everything we possibly can, within the confines of federal law governing employee health care plans, to address Ryan's tragic health situation."

Please stay with Today's Channel 6 News for the latest on this developing story.

The Middleton family featured on Extreme Makeover: Home Edition may be forced to sell their dream house. But it's not because of the economy and it's not because of their four sick children. Instead, the Stockdales are facing a new health crisis. At 28 years old Ryan has been diagnosed with something many doctors call the worst pain on earth, cluster headache. Less than .01% of the population has this many times debilitating disorder.

World experts on the condition, neurologists at the University of California San Francisco Medical Center, diagnosed Ryan with cluster headache before Christmas. He can experience up to ten attacks a day that leave him crying in pain. The condition has paralyzed Ryan's life. He can't work and Omnipure Filter Company in Caldwell let him go. He's dropped out of school. His role as dad is almost non-existent. "Bedtime stories and basketball games and fishing trips, that's all stopped. They are watching him suffer in a way no person should watch another suffer especially children," says his wife Karia Stockdale.

Ryan's tried dozens of drugs and treatments, but nothing works. Doctors say the last option is a procedure called deep brain stimulation. It's a risky procedure where doctors implant a pacemaker-like device that delivers electric stimulation to the brain. "It's brain surgery. Brain surgery is a scary thing. But watching him like this is worse. I want to give him the opportunity to live. He wants to live. He doesn't want to give up," says Karia. But, at this point, Ryan can not have the surgery because his health benefits plan, through Omnipure Filter Company, will not pay for it. Deep brain stimulation is expensive. The procedure alone is well over $100,000.

According to Ryan's health plan administrator, MS Administrative Services, Inc. in Meridian, money is not the reason they're denying the treatment. June Clark, Vice President of Operations at MS Administrative Services, writes the final decision, "is based on the following rational: The procedure is considered experimental/investigational."

It should be made clear, exclusions for experimental or investigational treatments are not uncommon in health coverage.

Clark goes on to say "because deep brain stimulation for cluster headaches has not been proven to be safe or effective by adequately powered clinical trails, its use would not be considered medically necessary." The administrator's denial was upheld by the independent reviewer, American Health Holding Inc., which wrote "the procedure is considered experimental/investigational."

Doctor Philip Starr at UCSF strongly disagrees. He even writes in one appeal letter "I beg you to reconsider..." and saying approving the procedure, "would be the morally correct and compassionate avenue." Doctor Starr says 60% of cluster headache patients that undergo deep brain stimulation experience profound relief.

The surgery is not approved by the Food and Drug Administration to treat Ryan's condition, which is the reason why the health plan administrator denied to pay for it. This same surgery though is approved by the FDA for a number of other disorders including Parkinson. Most of the medications Ryan has tried are not approved by the FDA for cluster headache either. Yet, for all of these, the health plan footed the bill.

David Lehman of Principle Strategic Advisors is working for free to help the Stockdales. He says the insurance plan, "made the decision to pay for those because they're trusting the judgment of the doctors. We're asking them to trust the judgment of the physician one more time for the deep brain stimulation procedure."

The Stockdales have one last appeal back at Omnipure Filter Company. Under the plan guidelines, the owner of the company has the final say in whether or not Ryan gets the surgery. "Ultimately the company has the ability to make the right decision and be a hero for Ryan and his family," says Lehman.