ALS, one of forty-three Muscular Dystrophy diseases, is a progressive and terminal neurodegenerative disease affecting brain/spinal cord nerves and pathways. Neurons transfer brain signals through the spinal cord to muscles, but with ALS, the neurons gradually die, disrupting the brain’s ability to initiate and control muscle movement. Symptoms include increasing muscle weakness, especially of the arms and legs, and difficulty speaking, swallowing or breathing; total muscle paralysis is unavoidable. ALS can be difficult to identify, and the average life expectancy is two to five years from the time of diagnosis.
ALS affects motor neurons and not organs. The sense of sight, touch, hearing, taste and smell are not affected, and it is expected Wayne will be totally alert and aware of everything until his death.
Wayne, an independent and hardworking man, was healthy his entire life until this unexpected genetic disease forced him into a medical disability retirement at the young age of fifty-five. He is a proud father of three (30, 28, and 24). He was involved in the Cambridge and Deerfield, Wisconsin communities, including coaching of youth baseball and soccer, and as the boys and girls soccer teams’ varsity head coach. He loved playing “old man” soccer, and remains an enthusiastic fan.
Though greatly boosted by the Ice Bucket Challenge, there is no cure or effective treatment. As of now, the ALS person will not get better, but we can aid their quality of life. Motorized wheelchairs; hospital beds; patient lifts; limb braces; breathing and suction (lung clearing) devices; feeding tube and catheter surgeries; communication technology devices and software; on-going prescriptions and medical supplies; and caregivers are all common aids and expenses for the ALS person. The cost is high.
For Wayne, Medicare/Medicaid, and private insurance have provided many of these, though not entirely without expense to him. Wayne can no longer use his hands, arms or legs, cannot walk, and his ability to sit upright without support is gone; he needs 24-hour care. The ALS Bulbar stage has rapidly affected his ability to talk, eat, swallow, and his breathing capacity is around fifty percent. Wayne’s most immediate needs are the ability to communicate and breathing assistance. The speech technology identified as appropriate for his needs exceeds $5,000, and a breathing machine and supplies can exceed $2,500. Both are beyond his means.
As Wayne enters the roughest stage of his life, he shares with you his plan to donate his organs, tissue and bones for transplant so others may have a better life. We thank you for your support and prayers; you are truly appreciated by Wayne and his family as they battle this terrible disease. The Muscular Dystrophy Association of Southern Wisconsin has provided tremendous support for Wayne. He has requested all remaining funds not needed for his care, quality of life, and end of life to be donated to them so they may support others battling their own muscular dystrophy disease.
To learn more about ALS and some of the great resources of these non-profit organizations, please visit:
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