A family is holding a fundraiser Saturday night for a young father who was recently diagnosed with a rare syndrome and is need of a liver transplant.

Craig Webber, 26, was flown to Halifax, N.S. from St. John's in July 2012 after becoming ill. He was then diagnosed with Budd-Chiari Syndrome – an extremely rare condition that causes blood clotting.

Webber and his wife Sarah, 24, were saving for a honeymoon when he received the diagnosis. Sarah flew to Halifax with their two children, Isaac, 4, and Eli, 1, while Craig was in hospital.

The couple said the diagnosis caught them completely by surprise.

"He doesn't drink, he doesn't do drugs, he don't smoke, he's pretty active," Sarah said. 

"It just came out of nowhere."

Waiting for transplant

When they came home from Halifax, Craig was put on the wait list for a liver transplant.

"They're actually telling me that I can expect a call [for a transplant] anytime – it could be in the next five minutes, or it could be a year from now," Craig said.

"We were told to have bags packed and ready to go, which we do," he said. "We have to jump on the first available flight out of here to Halifax. We have to have money available on hand, as well, to actually pay for the flights."

Financial burden

Sarah said the cost for her and her two children to be in Halifax with Craig for two weeks when he was first diagnosed was approximately $2,000. They estimate that Craig will need to remain in Halifax for eight weeks following his transplant.

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Craig and Sarah Webber in February. (Beth Macdonell/CBC)

"There's a lot of money [that] people who need transplants have to shell out in order to get these done," Sarah said.

"I'm getting kind of tired of trying to defend myself [when people ask], 'Why are you fundraising? Don't the government pay for all this?'"

She said that most people assume the federal or provincial governments would cover the majority of the costs for a family in their situation.

The provincial government does a program to reimburse families for a portion of the cost of travel, but the Webbers said the remaining financial burden is still too high, so they decided to hold a fundraiser.

"What more can I do? I've talked to these people who are supposed to help us and they said there's nothing they can do," Sarah said.

Craig said that the situation has been extremely stressful for them; they are both students and trying to raise their children.

"I guess that's just the way it is right now, cash out of our own pocket to fly there," he said. "It's just kind of heartbreaking – you save up for a honeymoon, and all of a sudden you just get sick and you have to spend that money to survive."

The event will take place in Lester's Farm Chalet at 6:30 p.m. on Saturday, Feb. 16.