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Sunday, March 8, 2015

Deaf or death? A family's heartrending decision

y-Cyclodextrin  (Public Domain)
There are a number of do-or-die decisions in life, but few so heartrending as choosing between the extension of life and the quality of life.

The Wall Street Journal reports on a Bethesda, Maryland family that is having to do just that.  Phil and Andrea Marella, parents of 15-year-old Andrew, have been faced with the decision of whether or not to approve Andrew’s participation in a clinical trial of the drug cyclodextrin.

Andrew, who suffers from a “rare genetic disease that kills most patients by the time they are old enough to vote,” may gain years of life with the drug, but may lose his hearing as the result of its side effects.

Andrew’s mother poignantly summed up their dilemma:  Deaf or death, what are our options?  She then bravely added:  We have to keep moving forward.

After receiving a dose high enough to cause some hearing loss, Andrew was tested in a       soundproof booth.  His thumbs-up indicated so far, so good.

Because hearing is often the only major connection that seriously-ill children retain with their loved ones, this choice to continue is decidedly a courageous one.  Nevertheless, bioethicist Dr. Unguru of Johns Hopkins asks:  Where do you draw the line?  Is it hearing loss, renal failure, infertility, cardiac failure? 


Copyright March 8, 2015 by Linda Van Slyke   All Rights Reserved

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