Every day we hear heartbreaking stories of children growing up without a dad and the troubling effects on them and our world. It's incredibly hard for me to be able to put myself in those children's shoes because I have the best dad in the world. I'm talking the kind of dad of which fairytales are made. He is faithful, loving, caring, strong yet gentle, smart, funny, quick-witted, and so handsome. He was even a firefighter and paramedic for the City of Memphis. Seriously, he is a real-life hero to me, my sisters, my mom and countless others.
Then, in 2015 tragedy struck our family. Mayo Clinic diagnosed my dad with Multiple System Atrophy-C (MSA-C), a rare degenerative neurological disease effecting only approximately 75,000 Americans. My dad's journey with MSA-C began in 2014 when his best friend noticed he was having mobility issues. Within 18 months my dad could no longer drive, shuffled his feet with a walker, and his speech became severely impaired. As he began to decline more rapidly, we sought a second opinion from a Movement Disorders Neurologist at UAB (2016). He confirmed the diagnosis and told us how to manage our expectations of the progression of this horrible disease. It was then he looked my father in the eyes and said, "You do whatever your body will allow you to do." He was right. Every two years the measurable progression of his symptoms are shocking. Today, two years after the doctor told him to do whatever his body would allow, he is confined to a lift chair, sleeps in a hospital bed, has a foley catheter, oxygen therapy, and has made several visits to the emergency room for incidents ranging from falls to aspiration pneumonia due to choking (a common symptom of MSA). Currently, there is no cure for this disease and treatment of symptoms is difficult due to fluctuations in blood pressure.
The life expectancy of MSA patients is 5-10 years after the onset of symptoms. The MSA Coalition is a dedicated group of volunteers whose primary purpose is to find a cause and cure, and raise awareness of this rare disease. Due to the rarity of people living with this disease research, education, awareness, and advocacy are critical components for the MSA Coalition's purpose.
Please consider contributing to the MSA Coalition to help give families like mine hope for a brighter future for those patients and families affected by this rare disease. For more information on this rare disease visit www.MultipleSystemAtrophy.org