April was diagnosed with ALS back on July 18th 2016. She was also diagnosed with Lyme disease. They were treating the Lyme disease with the hope that the ALS symptoms were actually from the Lyme. That turned out not to be the case. She had “bulbar onset” ALS. This means that it manifested itself in her face and respiratory system. Only about 15% of ALS patients start this way. Unfortunately, it is the most aggressive form.
Unfortunately the ALS took control and really started showing its sypmtoms in early October 2016 when she was unable to walk and by the end of November she was unable to feed herself. She was rushed to Walter Reed on December 20th where she was found to have blood clots in her lungs and by all rights should have died then. While she was in the hospital, they determined that the hoped for Lyme diagnosis wasn’t the case. It was at this point that we made the decision to not take extraordinary measures which may lengthen her life, but ultimately only prolong her suffering. Ultimately we brought her under hospice care on December 30th and hoped for the best
Despite our best hopes, April's abilty to eat declined dramatically closely followed by the ability to swallow any liquids. Needless to say this was more than her body could handle and she passed away on January 13th, 2017. Both Brendon and Carolyn as well as myself were by her side. We simply told her that we were only dropping her off at heaven gates in order to reserve us a table and that we would see her soon.
We need to let people with ALS know they are not alone. ALS affects more than nerve cells and muscles, it affects families, friends, co-workers, and communities.
With no known cause or cure, ALS challenges the human spirit and tests the courage of everyone touched by this devastating disease.
However, we can work together to create a Community of Hope that restores dreams and builds courage. Our community gives strength and hope to our loved ones, neighbors, and friends facing the fear and uncertainty of ALS.
Your gifts will make this possible. Please click the donation button to the right and give generously.
Thank you for helping us build a Community of Hope!
If you think this page contains objectionable content, please inform the system administrator.