Editor's note: This story was first published on Oct. 10, 2010
ROCK HILL -- As the rest of the student body at South Pointe High School passes through the "A" hall, past the special education rooms, one girl watches all of them through the glass of Room A134.
Because many do not know her by name, she is called "the girl in the window."
She watches and watches as the "normal" kids pass by. Nobody will ever know what she is thinking.
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Because Bunlang Ly, who turned 18 on Sunday, has the mental capacity of a 1-year-old.
She has a severe developmental brain disorder and a tumor on her pituitary gland, in the back of the brain, that is so severe and large it affects mood, behavior -- even bodily functions. She wears a diaper under her clothes.
But she interacts and learns, some, with her incredible teacher, Missy Pusey. Bunlang, nicknamed Lang, has made great strides in the four years she has been at the school with Pusey and her two assistants.
Without help to pay for medication that, until she turned 18, were furnished by the state, Lang could regress.
Her family and teacher and pediatrician say the medication - cabergoline -- is crucial to her limited success.
That medication might as well be gold - it is that important and that expensive.
Without the drug, Lang could return to the biting and the falling and the other uncontrollable behavior that was common before the medicine and the magic of her teacher and her patient father - and the help of so many with the schools, medical and social work communities.
"What we have here is a situation where so many people have worked together for so long, and it is nobody's fault," said Pusey, the teacher. "The only thing that went wrong is the calendar. It's her 18th birthday."
A chance at life
Simply, this is why Lang is in a bind.
For the past four years, Lang has been helped by Children's Rehabilitative Services, a program of the S.C. Department of Health and Environmental Control that assists families of children with severe medical problems.
Those state benefits - which pediatrician Dr. Martha Thompson, Pusey and Lang's father all rave about as being a godsend -- end at age 18.
Lang is not a typical special needs kid, if there is such a thing.
She is a legal immigrant from Cambodia, here just more than four years with her father, Bunthai Ly. They came to Rock Hill, sponsored by a family already here, for a simple reason -- so Lang could have a chance at life in her severely developmentally disabled condition.
Cambodian doctors had diagnosed polio, instead of severe disability.
Father still smiles
Lang's father understands some English but speaks very little. He works in a convenience store and lives with his daughter in a home he shares with others. His whole life is his daughter -- who can't talk to him and never will.
And still, he smiles. What he does say, through an interpreter, resonates in any language.
"I just want to help my daughter," said Bunthai Ly. "I will do for her -- anything."
But Lang is not a citizen yet. Until she and her father have been in the country five years, her father cannot apply for citizenship.
Because of her immigration status, Lang is not yet eligible for Medicaid, which would pay for her medication.
Dr. Edwards first met Lang in 2006 through the free clinic sponsored by the Rock Hill school district. Lang was literally climbing on the furniture, gouging her patient father, and worse, said Edwards.
"She had never been to school," Edwards said. "I had to chase her."
Edwards' referrals to other physicians, through the work of the school district and Children's Rehabilitative Services, found the brain tumor.
A typical prolactinoma tumor is the size of a pea, Edwards said - Lang's is the size of a golf ball.
Surgery was considered, even scheduled, but the cabergoline was found to work in large doses. So surgery was tabled and, as her behavior stabilized, Lang began the long, slow process of learning with Missy Pusey at South Pointe.
"When Lang came to me she cried all the time, she fell, she had seizures," Pusey said. "She was aggressive. She bit. She was, plainly, a handful."
But that was before the teaching and the medication. The cost per month, for the cabergoline alone, is more than $1,500.
Benefits come to an end
Lang shares class with four other severely disabled students who are each as wonderful as she is.
But Lang is different because of the citizenship issue.
Like all special needs students, she can stay in school until she turns 21, but the medical benefits are different.
Pusey -- more than a teacher, listed as a contact on Lang's medical forms -- started a blitz to find help.
She asked more than 80 agencies and departments in the medical and government realms - from congressmen's offices to doctor's offices - and found the same answer each time.
Lang can't be helped by any agency after age 18.
The work of several doctors -- and so many of the people with the state health department, and the schools -- shows that the system worked well for Lang as a child, said Edwards the pediatrician.
Lang received top-notch care and assistance on all fronts, from diagnoses to lab work, social work for her and her family, more.
The concern on the medical side is the regression without the medication.
"There is nobody to blame," Edwards said. "Nobody did anything wrong."
DHEC spokesman Thom Berry confirmed Children's Rehabilitative Services care for any child with special needs ends at the 18th birthday. The agency has had a team assisting Lang - who has permanent legal residency status - since she came to South Carolina in 2006.
An uncertain future
Pusey has worked all angles she can think of to help raise the money needed -- at least $15,000 -- to pay for the medications that have helped Lang achieve her changed behavior and better life for Lang and her father.
Her pleas to other teachers at her school and others have started a "Links for Lang" fundraiser at India Hook Elementary School, where links of a chain will be sold to encircle the whole school.
Drama teacher Jimmy Chrismon's plays and classes at South Pointe are helping. The Walgreens pharmacy at 2000 Celanese Road agreed to accept donations to pay for the medicine, as did the school district's Family Resource Center.
"Lang deserves it," Pusey said. "She has come so far."
There is enough medication to get Lang through this month. After that, nobody knows. Not Edwards the doctor or Bunthai Ly the father or Pusey the teacher.
Without help the girl in the window might not make it to the day her father takes the oath of American citizenship.
Want to help?
Checks only, no cash, are being accepted for the prescription fund for Bunlang Ly at:
Walgreens pharmacy, 2000 Celanese Road, Rock Hill, S.C., 29732
Rock Hill School District Family Resource Center, 410 E. Black St., Rock Hill, S.C. 29730
To contact special education teacher Missy Pusey, e-mail firstname.lastname@example.org.