LOUISVILLE, Ky. -- A Shepherdsville mother and her two children were stopped midway in a journey to China to seek treatment for the children's rare disease.

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Hailey Goranflo, 5, and her 3-year-old brother, Carter, have Batten disease, an inherited disorder of the nervous system that begins in childhood.

Hailey and her mother, Miranda, flew from Louisville to Chicago to Vancouver on Monday, where they were then supposed to catch a flight to China, but that's where their trip came to an abrupt halt.

"They are telling us to go home and let Hailey die," said Miranda.

Carter acts like any other child his age, playing on the computer and running around the house. But soon he will look like his sister, who depends on a feeding tube, can no longer talk and can't sit up on her own.

The siblings' only hope is a stem cell injection treatment that is performed only in China.

"This is extremely frustrating for us," Miranda said. "I just can't believe that we worked so hard and come this far only to be held up."

The Goranflos raised the $85,000 needed for the trip.

"They heard that Hailey was congested, which is a daily thing for her, but they made us get off the flight after about 40 minutes of arguing back and forth," Miranda said.

After being denied seats on a second flight, Miranda said the stress caused Hailey to have nonstop seizures, leaving the family no choice but to rush her to the hospital.

"They are not willing to sign the medical releases, even though Hailey is doing much better and she is stable," Miranda said. "They don't know Hailey like I do. None of these doctors have even heard of Batten disease."

Without a doctor-signed release, the only plane the airlines would let the Goranflos board was one headed for Louisville.

"If I go home, she will die in months," Miranda said. "Hailey doesn't have that much time to live."

Rep. John Yarmuth's office is now involved. They said they are doing everything they can to get the Goranflos to China.

An office representative said it looks like their only chance is to bring the family back to Louisville and try to fly to China through California.