It’s About Giving

by David Morstad

On Thursday, September 14, 2014, a man named Justin McCowan died in his sleep.  He was 40 years old.  And it didn’t seem fair.

In 2013, he had volunteered for a medical research study at the Memory Disorders Clinic at University of California at San Diego.  He told people that his reason for doing so was to help his friend, Maria, who had a more severe type of the same disease he did, Alzheimer’s Disease.

“Researchers are increasingly interested in people like Mr. McCowan,”  Dr. Michael Rafii, the director of the clinic, told a reporter.  A little clinical understanding helps explain why he said that.

All of us produce a substance called amyloid. It’s the substance that forms the plaques in the brain that are associated with Alzheimer’s Disease.  Some of us produce more than others.  The genes that control the production of amyloid all happen to be on the same chromosome – the 21st one – and some people happen to have an extra 21st chromosome.  The most distinctive effect of the extra chromosome, of course, is Down syndrome.  Because of that, by the age of 40, nearly 100 percent of all people with Down syndrome, including people like Justin McCowan and his friend Maria, have at least the brain pathology of Alzheimer’s if not the condition itself.  All because of a single chromosome.

And it doesn’t seem fair.

“People with Down syndrome represent the world’s largest population of individuals predisposed to Alzheimer’s disease,” reports Rafii, “They have a huge amount to contribute to the research world.”  One might amend that observation to read that people with Down syndrome have a huge amount to contribute far beyond the research world.

BrainFor a year, Justin stepped forward on behalf of his friend and took a daily medication known only as ELND005 to see if it made any difference.  I cannot speak to what Mr. McCowan understood about any real impact he would have on his friend’s, long term health by offering himself up as a test subject.  I only know that it mattered to him.  He saw someone he loved who was in peril and he did all he could, and gave all he had, offering his own life and well-being in sacrifice for someone else.  As Christians, we are familiar with that narrative.

Down syndrome is decidedly not fair, and yet, here it is, in this instance, oddly beneficial.  Alzheimer’s disease is decidedly unfair, and yet, in this particular story, there is a peculiar wholeness to be found in it.  In the midst of the most unfair circumstances, we are drawn forward to a better place, a stronger relationship, and a deeper understanding.  A story of fairness has become a story of grace.

Grace is not about fairness, but about giving.  It is an endless, extravagant and lavish outpouring of abundant and completely undeserved love.  Is it fair?  I suspect that God has little interest in that question, but would choose to answer it with loving assurance: “For it is by grace you have been saved, through faith – and this is not from yourselves, it is the gift of God.” (Ephesians 2:8)

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