Spinraza Thoughts So Far...
I know I said I was going to share some information about the new treatment, first ever treatment that is for persons living with SMA (Spinal Muscular Atrophy), like me! It is not available in Canada yet, but it is in the USA. My reservations about celebrating this treatment still stand because I have yet to confirm that the process is ethical. My heart goes out to the little ones who seem to be benefitting from Spinraza. Yet, I remain reserved. Not sure why, I just really need to know and understand more.
Cured In A Body With ALS
On that note, I want to share an inspiring video about a man named Dandy who lives with Amyotrophic Lateral Sclerosis (ALS). ALS is a cousin of SMA but to date as far as I know of, this disease attacks people in adulthood and tears down the entire body's muscles within 2-5 years. The coolest thing of all, inspite of the rapid progression of the ALS, Dandy considers himself already healed. Yes, his muscles do not work, he needs assistance breathing and eating with a G-tube, and assistance with all aspects of daily living. His speech is affected as well and as ALS rages on, unless a cure or miracle happen, he will lose all speech and eventually his physical life on earth. But he knows where his real hope comes from. Take a watch and see why Dandy considers himself healed, when the world would disagree. I want to add that I concur with this inspiring man's viewpoint.
