Bryan Robinson via Crowdrise
September 25, 2012
My wife never got to meet my mom, at least not the true her. By the time I met my wife, my mom was in the final year and a half of her life and by that time, she was bound to a wheelchair lovingly called "the tank". She had lost much of her ability to communicate by this time so her outgoing personality was trapped within her.
My son and daughter will never get to meet their grandmother. She passed away in February of 2010, a month before my son (her first grandchild) was born. More than anything, she was looking forward to "baby sitting" and even though we all knew she couldn't really do it, we indulged her in this. It still breaks my heart that she missed such a big event in both my life and hers by a month. I'm just glad that I was able to spend the last couple days of her life with her.
In her early 50s my mom was diagnosed with with a form of sporadic ataxia known as multiple systems atrophy. - cerebella type (MSA-C) and weeks before her 58th birthday, she passed. MSA is associated with the degeneration of nerve cells in specific areas of the brain and is similar to Parkinson's but with much shorter lifespan for the patient by the time of diagnosis. This cell degeneration causes problems with movement, balance and other autonomic functions of the body such as blood-pressure regulation. By the end, it was dificult for my mom to just continue to breath. The cause of MSA is unknown and no specific risk factors have been identified. There is no remission from the disease and the average lifespan after the onset of symptoms is 7.9 years. Almost 80% of patients are disabled within 5 years and only 20% survive past 12 years.
She loved to travel, camp and hike, and go to Fomula 1 events. Shw was always the life of the party, a true social butterfly and always looked forward to watching her USC Trojan football every year.
I am raising money for the National Ataxia Foundation (the general disorder of my mom's disease). Please donate if you can even if it is just $10 that will never be missed from your bank account. It will mean the world to someone else.