Jeannine
08-01-2010, 12:19 PM
Alissa Corlew would love to eventually be the president of the United States, help stray animals and establish charities. Before then, however, she thinks she'd like to be a fashion designer or maybe a singer.
"I love any type of performing. I feel like I was born for the stage," the precocious 10 year-old said. "I'm an aspiring ballerina, too, so maybe that's in my future."
While she has grand plans for her future, her immediate hope is actually quite simple: to be able to see water rush by.
"It's always been my dream," Alissa said.
The Hudson Falls girl has optic nerve hypoplasia, a disorder that her doctors say is inoperable. While she can see contrasts of light and dark, in her particular case she can see nothing in fine detail or anything in the distance.
"The main nerve from the eye to the brain has millions of optic fibers, and Alissa is missing quite a few of them - so she doesn't get clear perception," Carolyn Corlew said about her daughter's condition.
The rising sixth-grade honor student knows Braille and uses a closed-circuit television that is hooked up to a computer so she can read books, which she devours.
Her favorite series is "My Sister, the Vampire."
"It's super cool. I mean this girl finds her long lost twin sister and she turns out to be a vampire, so they're trying to figure out their birth parents. It's just super good," she said enthusiastically.
Soon after Alissa was born, Carolyn thought she had a lazy eye condition and mentioned it to her pediatrician. After being referred to a pediatric ophthalmologist, the 3-month-old was diagnosed with the condition. A CAT scan of her brain revealed that she also had a small pituitary gland, which Carolyn said is responsible for Alissa's short stature. She was given growth hormones at age 9.
A second opinion from a doctor in Rochester confirmed the optic nerve hypoplasia diagnosis and that it was untreatable.
The family was willing to accept the finality of Alissa's condition until last November when, by chance, they met a gentleman whose 18-month-old grandchild had the same disorder.
Carolyn learned that the child was scheduled to have experimental surgery overseas once he turned 5.
The procedure involves using embryonic stem cells, which has not been approved by the FDA in the United States.
She immediately went online to learn more about the surgeries being conducted in the southern part of China. After e-mailing Alissa's medical records, she applied for her daughter to be a candidate.
In January, she was approved, and now the family is trying to raise roughly $40,000 for "Alissa's Fight for Sight" in hopes that she will be able to travel next May for the operation.
Carolyn describes the proposed surgery as "trial and error."
"It's how your child's body adapts to it. Your child gets the stem cells, and the stem cells go to Alissa's optic nerve. There are missing fibers, so the stem cells would go where the fibers are not. It may work, it may not work. That's the chance we're willing to take," Carolyn said.
Approximately 7,000 people have had the surgery in China, and some people who had not previously had light perception began seeing light, according to Alissa's father, Chris.
Two earlier fundraisers netted about $1,400 and collection cans have been set up in various locations in the area.
An adult comedy show is being planned by John Simmes, a family relative, in late August, with more events to follow in September, Carolyn said.
While the outcome is uncertain, the family feels they can't let this opportunity pass for Alissa to have the procedure.
"If my child comes back with a little more than what she has now, we tried. The United States is offering us nothing to fix her vision, so we're going someplace else where they're offering us something. She deserves to see the world like everybody else," Carolyn said. "She has such great dreams and she's going to fulfill them."
http://poststar.com/lifestyles/article_14298400-9c52-11df-ac0b-001cc4c03286.html
"I love any type of performing. I feel like I was born for the stage," the precocious 10 year-old said. "I'm an aspiring ballerina, too, so maybe that's in my future."
While she has grand plans for her future, her immediate hope is actually quite simple: to be able to see water rush by.
"It's always been my dream," Alissa said.
The Hudson Falls girl has optic nerve hypoplasia, a disorder that her doctors say is inoperable. While she can see contrasts of light and dark, in her particular case she can see nothing in fine detail or anything in the distance.
"The main nerve from the eye to the brain has millions of optic fibers, and Alissa is missing quite a few of them - so she doesn't get clear perception," Carolyn Corlew said about her daughter's condition.
The rising sixth-grade honor student knows Braille and uses a closed-circuit television that is hooked up to a computer so she can read books, which she devours.
Her favorite series is "My Sister, the Vampire."
"It's super cool. I mean this girl finds her long lost twin sister and she turns out to be a vampire, so they're trying to figure out their birth parents. It's just super good," she said enthusiastically.
Soon after Alissa was born, Carolyn thought she had a lazy eye condition and mentioned it to her pediatrician. After being referred to a pediatric ophthalmologist, the 3-month-old was diagnosed with the condition. A CAT scan of her brain revealed that she also had a small pituitary gland, which Carolyn said is responsible for Alissa's short stature. She was given growth hormones at age 9.
A second opinion from a doctor in Rochester confirmed the optic nerve hypoplasia diagnosis and that it was untreatable.
The family was willing to accept the finality of Alissa's condition until last November when, by chance, they met a gentleman whose 18-month-old grandchild had the same disorder.
Carolyn learned that the child was scheduled to have experimental surgery overseas once he turned 5.
The procedure involves using embryonic stem cells, which has not been approved by the FDA in the United States.
She immediately went online to learn more about the surgeries being conducted in the southern part of China. After e-mailing Alissa's medical records, she applied for her daughter to be a candidate.
In January, she was approved, and now the family is trying to raise roughly $40,000 for "Alissa's Fight for Sight" in hopes that she will be able to travel next May for the operation.
Carolyn describes the proposed surgery as "trial and error."
"It's how your child's body adapts to it. Your child gets the stem cells, and the stem cells go to Alissa's optic nerve. There are missing fibers, so the stem cells would go where the fibers are not. It may work, it may not work. That's the chance we're willing to take," Carolyn said.
Approximately 7,000 people have had the surgery in China, and some people who had not previously had light perception began seeing light, according to Alissa's father, Chris.
Two earlier fundraisers netted about $1,400 and collection cans have been set up in various locations in the area.
An adult comedy show is being planned by John Simmes, a family relative, in late August, with more events to follow in September, Carolyn said.
While the outcome is uncertain, the family feels they can't let this opportunity pass for Alissa to have the procedure.
"If my child comes back with a little more than what she has now, we tried. The United States is offering us nothing to fix her vision, so we're going someplace else where they're offering us something. She deserves to see the world like everybody else," Carolyn said. "She has such great dreams and she's going to fulfill them."
http://poststar.com/lifestyles/article_14298400-9c52-11df-ac0b-001cc4c03286.html