Woman takes her 5-year-old daughter to China for possible life-saving treatment - WDRB 41 Louisville News

Woman takes her 5-year-old daughter to China for possible life-saving treatment

A Shepherdsville mother is on her way to China to try to save her five-year-old daughter's life..

Hailey Goranflo is heading to China to undergo a series of controversial stem cell implants.  It is costly, but could dramatically improve her life.

Hailey Goranflo has not smiled in a month.  Her mother says it's a sign of her regression.

Hailey's involuntary movements are part of Batten Disease -- a disorder that plagues her and her younger brother. 

Their mother, Miranda Goranflo, explains, "They have a gene that is supposed to produce enzymes to break up brain waste.  And they are severely deficient in that enzyme -- so their brains just pile up with waste."

The disease can leave children blind, demented, or cause them to suffer seizures.  Miranda Goranflo says their life expectancy is only eight to twelve years.  So she has packed for a long journey.

She will spend the next seven weeks in China with her daughter as she undergoes a series of stem cell implants that could help reverse the effects of the disease:  "There is nothing else for our children except the stem cells in China."

Their first attempts to travel more than a week ago were cut short when Canadian airlines refused to allow Hailey on board, claiming she was too sick.  Miranda says, "The whole thing was just a total mess, but we are trying to look at the bright side."

Miranda says the use of embyronic stem cells through clinical trials are not available for them in the United States.

She knows the procedure in China is risky and controversial.  "We, of course, are not for abortion at all, but the way I look at it no one is having an abortion just for us.  Unfortunately that is already being done. We try to look at it as we are making some good out of some bad."

Miranda and her husband have taken flack from the public on a website devoted to Hailey and her brother, Carter, who at age three has shown less severe symptoms.

Community fundraisers helped raise the $88,000 necessary to pay for trips.  Carter will undergo a similiar treatment in August using umbilical stem cells.  Miranda says, "I think they might have a change of heart if they were in my shoes -- if they had two dying children and no other hope.....Carter still walks around and talks just like Hailey used to do.  It's just so hard picturing him like this. We trying to get to him before that happens....This is our only hope, and Hailey will be only the fifth child with Batten's to be treated over there at that hospital.  Three out of the four children who have been treated are doing much better."

She continues, "Hailey hasn't smiled in over a month, and even if we could just get that sweet smile back that would make all of this well worth it."

Miranda is driving Hailey to Chicago for their flight Tuesday morning.  She says Hailey will be only the fifth child with Batten disease to undergo this treatment.

If you would like to contribute, the family has set up Goranflo Trust at Fifth Third Bank.

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