On January 12, 2014, our mother, LuAnn, lost her 6 year battle with Multiple System Atrophy (MSA) at the age of 57. Given the rarity of this disease, it is our mission to bring awareness, to support other victims, and to raise funding for MSA research.
MSA is a rare, degenerative neurological disorder that impairs the body’s involuntary functions and overall muscle movement. Affecting both men and women in their 50’s, there are no drugs or treatments to delay the progression of the disease. The cause is unknown and there is no cure. It is progressive and it is fatal.
After 4 years of several surgeries, countless visits to specialists and multiple misdiagnoses-- all the while suffering from chronic abdominal pain and Parkinson's-like symptoms including tremors, rigid muscles, impaired posture, no balance and extreme weakness, mom was officially diagnosed with MSA in October of 2012.
Mutiple System Atrophy took away mom’s ability to write, walk, talk, move, chew, swallow and breathe easily. Her cognitive ability was 100% while her physical ability was completely impaired. She was unable to stand, brush her hair, call a friend or even hug her grandchildren. The last 15 months of her life, she was completely disabled and required full-time skilled nursing care. In addition to her lack of mobility, she suffered tremendously from chronic, severe and unmanageable abdominal pain.
With little known about the disorder and no treatments available, we were forced to watch the disease progress. The experience of witnessing a wonderful woman suffer as she was trapped inside her own body- was nothing short of devastating. Although she endured a painful and dreadful journey, she never allowed MSA to define who she was. She died a true warrior with extreme dignity and grace. Her faith remained strong and she left a loving legacy demonstrating what really matters most: faith, family and friends.
In hopes of helping other MSA victims, mom graciously donated her brain tissue to the Mayo Clinic to aid in the research of MSA’s causes, potential treatments and a cure. Now we are asking you to help us in doing our part. In memory of our beautiful and loving mother, please join us in raising awareness and funding for MSA; And in remembering an amazing woman who gave graciously and unselfishly. She truly was and still is an inspiration.
Thank you for your continued support. Much love and prayers for peace.