ALS, STEM CELLS, AND THE BATTLE
My neighbor's brother died last week.
He had ALS (Amyotrophic Lateral Sclerosis).
I never met the man, but I was moved and inspired by the courage and dignity
with which he handled his illness. I am told that in spite of surely
unbearable pain, he went about making the necessary plans for his family,
his finances, and his belongings, so that everything was "in order" at the
end.
I am no expert on ALS, but I know enough about it to know that it makes my
own disease (Parkinson's) look like a picnic by comparison. Living with ALS
is terrible; dying of it is terrible; according to my neighbor and others,
the end, when it finally comes, is a relief and a release. My neighbor's
brother didn't eat or drink anything for the last two weeks of his life.
His family was grateful for this, because it meant that he didn't choke to
death, which is apparently very common for ALS patients, and very painful
for both the patient and his loved ones. Instead, he died quietly in his
brother's arms, in the presence of other family members, knowing on some
level that he was with people who loved him very much, and whom he had
loved.
I used to say, and still believe, that living with a degenerative disease is
not a tragedy; the real tragedy is allowing it to stop you from living your
life to the fullest. But I believe there is also a tragedy of a much
greater magnitude: the fact that we are, in effect, fighting these diseases
without using the best weapons available. Embryonic stem cells, the
scientists and doctors tell us, may provide us with the best weapons
available in the struggle against ALS and other illnesses. We cannot know
for certain what cures and new treatments embryonic stem cell research will
lead us to, nor how long this may take. But we will never know if we do not
pursue this work to the fullest and find the answers to these questions.
The ALS patient never had a chance against his quiet, ruthlessly efficient
and determined killer. If not for the misguided federal policy effectively
cutting off funding for this research, would he have had a better chance?
If we do not reverse this policy now, how many other patients and their
families will have to endure what my neighbor's family endured - perhaps
needlessly?
All we are asking for is a chance. Give us a chance. Give ALS patients a
chance. Support embryonic stem cell research. The diseases are bringing
all of their weapons to bear; as human beings, do we not owe it to our
fellow man to engage these diseases in battle fully armed?
-- Dan Kiefer,
California
P.S. Go to www.stemblog
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