Cystic Fibrosis (CF) is an inherited disease caused by a genetic defect that interferes with the body’s ability to carry salt and water to and from cells. This causes buildup of thick mucus that clogs up the lungs and digestive organs. CF is passed to offspring by parents who carry the CF trait in their genes. Carriers of the CF trait do not have the disease of CF…and they never will. In fact more than 10 million Americans carry the CF trait.
CF is not contagious, however individuals with CF (the disease, and not carriers of the trait) are prone to certain bacterial lung infections which can be dangerous to other individuals with CF. For this reason physicians recommend that ideally two non-siblings who have CF should not be in close proximity to each other when possible, in the same school for example.
When 11 y/o Colman Chadam’s parents registered him at a new school they informed the school that Colman carried the genetic trait for CF. They did this apparently out of an abundance of caution, since there simply is no reason to disclose private genetic information to your child’s school. In fact there are laws against the government requiring citizens to obtain genetic testing and divulge the results. True to form, no good deed goes unpunished, especially when it involves placing complex medical information in the hands of medically ignorant and administratively lazy fools.
A few weeks into the school year at Jordan Middle School, school officials took note of Colman’s medical history, information that eventually was shared with another Jordan parent whose two children have classic cystic fibrosis and are predisposed to chronic lung infections. Seven weeks into the school year officials told Colman to say goodbye to his classmates, he had to leave the building forever. Officials gave no warning to the parents or opportunity for a hearing. Nor did they have any expert review any of Colman’s medical records or even speak with his physician. In fact, as far as the school was concerned, they acted based on information the parents gave them as lay people. And they acted without cause.
Carrying the trait is never a risk to anyone around you, including individuals with CF. Since 1 in 20 Americans carry the trait, and the vast majority are unaware that they do, and since genetic testing for determining who carries the CF trait is a very recent advancement, it can be expected that in a school of approximately 1000 students, like Jordan Middle School, it can be expected that around 50 students are carriers of CF. But ignorance is bliss and now one of those scarlet letter CF carriers is being kept away from our at risk youth and their precious bodily fluids.
Seriously, whoever was in charge of this empty-headed witch hunt should be fired, possibly on Christmas Eve for effect.
Until then we can take solace in the fact that the parents are suing the school district, which for its part is continuing to make a fool of itself. From SFGate.com:
Palo Alto Unified administrators did what they thought best given the information they had and the significant risk to students, said the district’s attorney, Lenore Silverman. “This is a very unusual situation,” she said. “The district is not willing to risk a potentially life-threatening illness among kids.”
The administrators sought medical advice, Silverman said Thursday, which resulted in a recommendation from Dr. Carlos Milla, of Lucile Packard Children’s Hospital, saying that, ideally, children with cystic fibrosis would attend separate schools.
The recommendation was not based on knowledge of Colman’s specific medical history, his parents and their attorney said prior to Friday’s court appearance.
Colman’s only link to cystic fibrosis was a genetic test done 11 years ago, his mother said. “Honestly, if I felt Colman was a risk to others, I would move him,” she said. “I don’t want anyone to get sick.”
Except that in fact this is NOT a “very unusual situation”, unless she means an unusually stupid and inexcusable bit of buffoonery on the part of the school district. Note the wording Silverman uses for the recommendations of Dr. Milla: “children with cystic fibrosis would attend separate schools”. The problem is, Colman does not have Cystic Fibrosis. Hopefully a judge will quickly tell the district they are idiots and young Colman can rejoin the friends he had just spent 7 weeks making as the new kid in town, back at his desk in home room.
CF, paloalto, Jordan, jordan elementary, Palo Alto, Colman Chadam