ALS Worldwide welcomes any questions or comments you might have.  We provide free, personalized and confidential support services to anyone in the ALS community—whether you are a patient or a loved one, friend, health care professional or caregiver of someone diagnosed.

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ALS Worldwide
1800 North Prospect Avenue, Suite 4B
Milwaukee, WI 53202

ALS Worldwide
February 02, 2017

A Mother’s Story: Father Sophronios

When the anticipated birth of your child arrives, all you want to hear is that you have given birth to a beautiful healthy child. My husband and I were blessed with two healthy sons, three years apart. Our life together brought us all the happiness we could have hoped for. Our sons matured into wonderful adults; each one successful in his chosen career.

In 2008 the reality of the cycle-of-life hit us with the passing of my husband and my sons’ father. However painful that was for us, one is prepared for the loss of a loved one who was blessed to live long enough to see and enjoy grandchildren.

In 2010, we were not prepared to hear the devastating news that my son was diagnosed with ALS. The only thing I knew about ALS was that Lou Gehrig died from it and that it was also known as Lou Gehrig’s disease.

Just prior to becoming ill, my son chose a spiritual path. Devoting his life to Christ and becoming a Greek Orthodox monk, he is now living in a small monastery on a mountaintop in Crete. He is blessed to be in this spiritual environment receiving exceptional care from his Abbot and the brotherhood.

While his caretakers are incredible loving people, they, too, were not knowledgeable about ALS. We knew we needed to gain more information so we started searching the internet. Many searches brought much information about what to expect with the progression of the disease but this only heightened our anxiety. Then a miracle came to us when we contacted ALS Worldwide. Barbara and Steve Byer were immediately so compassionate, so knowledgeable and so accessible. We knew we had struck gold with this wonderful organization and we felt so relieved to have found the support we so desperately needed.

Steve and Barbara Byer travel to many countries all over the world comforting patients and their families, sharing their knowledge about the latest medicines, cutting-edge breakthroughs and providing a network and community for so many ALS sufferers. They are tireless angels and have visited my son many times. Even a monastery high on a mountaintop in Crete is no deterrent for them. We can never thank ALS Worldwide enough for the compassion, knowledge and hope they bring to my son and our family.