Airlines Thwart Plans of ‘Too Sick’ Girl, 5, to Travel to China for Stem Cell Treatment

Monday, June 30, 2008
FoxNews

As a parent what would you do?….flagranny

Two airlines this weekend declined to fly Miranda Goranflo and her daughter Hailey to Beijing, where the 5-year-old was to receive stem-cell treatments for a rare fatal disease, the Courier-Journal reported.

The airlines, Air China and Air Canada, decided during a layover in Vancouver, British Columbia, that Hailey was “too sick” to fly this weekend. After being treated at a Vancouver hospital for seizures, the girl and her mother were forced to fly home to Shepherdsville, Ky., the report said.

“I’m completely distraught,” Goranflo, who disagreed that her daughter was unfit to fly, told the Courier-Journal from Vancouver. “I cannot believe we’ve come this far and we have to come home.”

Click here for photos of Hailey.

Hailey and her 3-year-old brother Carter suffer from an incurable disorder called Late Infantile Batten Disease. The disease causes seizures, dementia, and blindness. Most sufferers don’t make it beyond the age of 12. Hailey can no longer walk, talk or eat without a feeding tube, the report said.

Batten disease is relatively rare and occurs in an estimated 2 to 4 of every 100,000 live births in the United States, according to the National Institute of Neurological Disorders and Stroke.

After raising $78,000, Hailey’s parents planned to take her to China for an experimental stem-cell treatment that is not offered in the U.S.

Details of Hailey’s thwarted trip were posted on the family’s blog Saturday.

Click here for more on this story from the Courier-Journal.

Zach’s Story: Little Boy’s Courageous Battle Against Old Age

Monday, March 17, 2008

FRANKFORT, Ky. —  If he’s lucky, Zach Pickard will live past the age of 13.

Zach, now 13 months old, suffers from Hutchinson-Gilford progeria syndrome, a disease that accelerates the aging process when the child is 18 to 24 months old. Children with this syndrome die of heart disease at an average age of 13 after aging at a rate six to eight times faster than an average person.

About 100 cases have been formally identified in medical history, and the odds of being diagnosed with it are roughly one in 8 million. For now, Zach is like any other baby, learning to walk, say words like mama and papa and making his family laugh with funny faces.

With his messy blond hair, big blue eyes and infectious smile, Zach attracts attention wherever he goes. Zach was 2 months old when his parents realized something wasn’t right.

Click here for the full story which includes a link related about Hutchinson-Gilford progeria syndrome