Curtis Anthony, a five-year-old boy from Dublin, Pennsylvania, lived a normal and happy life until two years ago when he suffered a seizure.
As the attacks continued his condition worsened, and doctors strove to figure out what was wrong with him.
Eight months ago, the youngster was diagnosed with Batten disease - a fatal, inherited disorder of the nervous system that begins in childhood.
Early symptoms usually appear between the ages of three and five. Parents or physicians might notice a previously healthy child suddenly developing problems with vision, or suffering seizures.
In some cases the early signs are subtle, taking the form of behavior changes, clumsiness or stumbling.
Over time, affected children suffer mental impairment, worsening seizures and progressive loss of sight and motor skills. Eventually, they become blind, bedridden and demented.
Many sufferers die in their late teens or early 20s.
As there is currently no cure for the disease, the only way to slow its progression is stem cell injections - a treatment limited to clinical trials in the United States.
But Anthony's mother Donna Kapper has no plans to give up without a fight.
After her application for stem cell injection therapy was turned down in the US due to limited quotas, Kapper and her mother Nancy took Anthony to Beijing's Tiantan Puhua Hospital on Wednesday for the treatment.
"At first I was scared and nervous, you know, traveling half way around the world. But this is the only way to save my boy, and I cannot quit," Kapper told China Daily on Friday.
"We know there is no cure and the brain damage cannot be reversed, but I just want to improve the quality of his life, and maybe see some progress," she said.
"And you don't know what might happen a couple of years down the road They might find a cure."
Anthony is not the first child to receive stem cell injections at Tiantan Puhua. Seven-year-old Sacha Skinner from England and five-year-old Blake Dell'Aringa from California have also been treated there.
Their parents have reported positive results in their blogs, including better muscle control, hand coordination and communication; all of which has helped keep Kapper's hopes alive.
As Kapper was talking, Anthony lay quietly in her arms, occasionally attempting to move his arms and legs.
The child's condition has deteriorated significantly since last year, his mother said.
He has lost almost all of his sight and ability to make facial expressions; he can no longer walk and is unable to feed himself.
Yang Shichun, vice-president of the hospital, said: "The disease is very complex and assaults the whole body. So we have developed a comprehensive therapy."
Yang said Anthony will receive a range of treatment that combines traditional Chinese and Western medicines. The injection of stem cells into his cerebral spinal fluid is only a "tiny part" of the whole process.
"What we can do is try to stabilize his condition and recover some of his abilities, so he can live longer, perhaps until a cure is found," he said.
Kapper said she is confident of the outcome because of the "different nature" of the treatment in China.
While his father, Paul Anthony, continues to work in the United States, the boy will stay in Beijing with his mother and grandmother for two months while he undergoes the first round of treatment.
The treatment process comprises three rounds, each costing $50,000 including airfares.
At her friend's suggestion, Kapper set up a website (http://curtisanthonyshope.org) to help raise money to pay for her son's treatment. She also sent 50,000 e-mails to people asking each of them to donate $1.
As of Friday, her efforts had succeeded in generating $76,000 from people around the world.
"I have posted new pictures and videos on the website to show Curtis' smiles to them all, and to say thank you."
(China Daily January 12, 2008)
