Isaac McFadyen is a sweet, 2-year-old boy facing an uncertain future.

The Campbellford boy is fighting a rare and relentless disease as his parents battle to have the only available treatment for their son -- a U.S.-made drug that costs $300,000 a year for patients like Isaac -- paid for by the province.

"The government has the opportunity to determine how my son's life will be," said his father, Andrew McFadyen. "They do have an opportunity to change the course of his life."

ENZYME DEFICIENCY

Isaac was diagnosed last October with Maroteaux-Lamy Syndrome, or MPS VI, a disease caused by an enzyme deficiency that may affect as few as three in Canada. Over time, the disease stunts growth and causes joints to stiffen, heart valves to fail and corneas to cloud.

Already, Isaac can't extend his arms over his head from stiff shoulders and his corneas are beginning to cloud. He had major surgery in April to ease compression on his spinal cord.

With the treatment, Isaac will grow up "a normal, healthy boy." Without it, he faces a future of stunted growth, hip replacements and cornea transplants.

"The earlier you get the treatment the better," said his dad, who has launched The Isaac Foundation to raise awareness about the disease and funds for research and treatment.

The makers of naglazyme, an enzyme replacement, turned down a request to pay for the drug and Isaac's parents took their appeal for help last month to Queen's Park.

MOVE TO U.K.

The family's remaining option is to move to the U.K. -- Andrew McFadyen is eligible for citizenship -- where the government pays for the drug.

"This is a kid that desperately needs help in Ontario," he said. "Another country is going to pay for his treatment. Why not here?"

Conservative health critic Elizabeth Witmer has asked the government to pay for treatment until there's a national strategy for patients with rare diseases that require drugs that are expensive and not yet approved in Canada.

"We've got a little boy, who's 2, who's already gone through surgery to treat some of the symptoms of the disease," Witmer said. "We could certainly do something to ensure the disease doesn't progress."

David Spencer, spokesman for Health Minister George Smitherman, said the government is working "quite closely" with the drug's manufacturer.

"We're working very hard to see what may be possible," he said.

For more information, see theisaacfoundation.com