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)
