few months ago, Colman Chadam was the new kid at Jordan Middle School in Palo Alto, Calif. But now, just as he was settling in, the 11-year-old may be forced to transfer to a nearby school because he carries a gene for cystic fibrosis. His parents say he's not a risk to other students. Administrators say he could be, and the decision is now being fought in court. (Colman is being homeschooled in the meantime.) Why has Colman been singled out? Here, a brief guide:
First off: What is cystic fibrosis?
A life-threatening lung disease that is passed down to children from their parents. It is typically associated with a mucus buildup in the lungs that can cause dangerous, sometime fatal, infections. There are more than 1,800 identified mutations of the gene that causes cystic fibrosis, some disease-causing, some not. Millions of Americans carry some sort of associated defective gene, but do not have symptoms. A person must inherit two of the defective genes, one from each parent, for the physical manifestation to take root. The disease is not considered contagious.
And what are the details of Colman's case?
It's not clear if he has two copies of the gene because his medical records have not been made public. His parents say their son does carry the genetic mutation, but has never had the classic lung problems, has never required treatment, and tested negative on a sweat test — the definitive diagnostic tool. His parents and doctors have reportedly monitored the boy closely to watch for signs of the disease since the genetic test came back positive 11 years ago.
So why did the school kick him out?
To prevent cross contamination with other students at the school who have the disease. While cystic fibrosis is not contagious, children and adults who have the disease can put each other at risk when in close contact with one another, spreading potentially deadly infections among their already vulnerable lungs. But Colman's parents contend that the school's decision was made blindly. Ahead of the school year, the parents disclosed their son's medical history out of an "overabundance of caution." Officials reportedly shared this information with another parent whose two children have the classic cystic fibrosis, lung ailments and all. Afterward, "the school district freaked out," Colman's mother says.
Is Colman a risk or not?
If a child has a normal sweat test, which Colman reportedly did, and he does not have classic cystic fibrosis pulmonary issues, which he reportedly does not, "that child is at absolutely no risk to the children that have classic cystic fibrosis," says one doctor with no specific knowledge of this case. But the world of cystic fibrosis diagnosis is an ever-evolving one, and doctors are still researching and debating which variations mean someone has the disease versus being a benign carrier only.
Is the school overreacting?
There are reportedly other protocols the school could have considered, as outlined by Cystic Fibrosis Foundation, that include separating the children into different classrooms and being diligent about disinfecting desks and hands. The school definitely took an extreme action, says Erika Souter at The Stir. "The rule is doing more harm to this child than good." Not so fast, says district attorney Lenore Silverman. "This is a very unusual situation," and we are simply "not willing to risk a potentially life-threatening illness among kids."
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