SAU CFDD
Aug 212014
 

By Lindsay Steele

In the last few weeks, my Facebook wall has been flooded with videos of people pouring buckets of ice water over their heads in an effort to raise money and awareness for ALS. Millions have doused themselves with ice water, filmed it, and challenged others via social media to either do the same or make a donation to ALS research. It’s the first time I’ve seen this illness given this type of mass media exposure, and frankly, I’m encouraged.

Lindsay Steele
The Schoon family – Renada, Sara, Brad and Lindsay – in January 2007, about 6 months before Brad’s ALS diagnosis and about a year before his death from the disease.

I lost my father to this horrible, cureless disease seven years ago.

It started shortly after my sister Sara and I threw a surprise 25th wedding anniversary party for our parents. He started feeling weakness in his abdomen, and was tired most of the time. He got some temporary relief from his chiropractor, but the symptoms got worse. Trips to a neurologist and to Mayo Clinic confirmed a devastating diagnosis: Amyo­trophic lateral sclerosis (also known as Lou Gehrig disease). Within a few months, he would lose control of voluntary muscle movement, including his ability to eat, speak, walk and eventually breathe. He was given less than two years to live.

My father was always proactive about his health, but with ALS, there is no cure and no known way to prevent the illness, only a medication to extend life by one to three months. He opted to let nature take its course. Five months later, on Dec. 16, 2007, he breathed his last at age 47.

God did not abandon him, nor us; my father was resigned to his diagnosis and showed a lot of strength in his optimism those last five months. Instead of waiting to die, he used the time to get in touch with everyone he’d known throughout his life, and these friends and acquaintances provided him with frequent emotional boosts, as well as money to help with medical expenses.

He was, however, dreading the loss of his ability use his mouth to speak. As a teacher, his greatest joy came from being with people and helping them see their lives and the world in new ways. It was a miracle, then, that he was able to speak until the day before he passed away. God did not give him more than he could handle and we are grateful for that.

Still, there is great sadness in losing a parent, especially so young, and particularly one afflicted with a disease for which there is no known cure. As many as 30,000 Americans have the disease at any given time, according to the ALS Association, and it most commonly strikes people between the ages of 40 and 70.

ALS researchers have often struggled to procure funding, especially since it is not as commonly occurring as some other illnesses, and the ice bucket challenge has brought in much-needed funding.

The challenge was created as a way to fundraise for the ALS Association, though the Church asks participants to consider the fact that the ALSA participates in embryonic stem cell research.  The John Paul II Medical Research Institute in Iowa City is a pro-life alternative. Checks can be mailed to John Paul II Medical Research Institute, 540 E. Jefferson St., Suite 202, Iowa City, IA 52245. Donors must indicate that they want the donation to be used for neurodegenerative disease research, since they have other focus areas and campaigns.

My hope is that the ice bucket challenge will raise enough awareness to get people interested in continuing to donate to ALS research so that, maybe in my lifetime, there will be a cure. As for my sister, mother and me, we are currently making plans to participate in the ice bucket challenge as a family in memory of my dad.

(Editor’s note: Lindsay Steele is a reporter for The Catholic Messenger. Contact her at steele@davenportdiocese.org or by phone at (563) 888-4248.)

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  One Response to “Edge of 30: Thank God for ALS awareness”

  1. Giving to the John Paul II Institute is a wonderful alternative, where adult only stem cells are used in research to find a cure for ALS!

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