I don’t really remember how it all started. I think my mom was pretty good at hiding her weakness, a trait I’ve inherited from her. But I’ll never forget the phone call: “Suzy, there’s something wrong with me.”
I brushed it off, “I’m sure it’s nothing mom.” I think were my exact words.
Because all those things that happen to other parents don’t happen to mine. My family, while nowhere near perfect, was as pretty close as you get.
Two parents, married for 30+ years, with a girl and a boy. Besides the small stint when my brother was a rebellious teenager, we are as pretty easy going as they come.
That all changed.
It took another year after that first phone call for my mom to officially be diagnosed with MSA. When you learn about MSA and hear stories of people who have been through this disease, that story is not uncommon. It took many frustrating doctors visits, many invasive tests, many fruitless treatments to finally find out what this disease wasn’t.
Oddly enough, my parents chose to tell us her diagnosis on Thanksgiving day. Sitting around the dinner table, we read the fact sheet on MSA. I skipped to the end and read the one word you never want to read: terminal. In fact, from the onset of symptoms, most people with MSA don’t even live past 9 years.
How has MSA affected my family? In every single way possible.
It took my mom and my very best friend. It robbed my son’s future memories with his “memaw”. It removed my dad’s wife and anchor. My husband, sister-in-law, brother, aunts, niece, all have a different life today because of MSA.
I fundraise because nobody should ever have to see their loved one go through the nightmare that is MSA. My mom lived for 2 years past that first phone call. Those years were filled with a steady decline that was impossible to watch.
The MSA Coalition has been a light in the tunnel for us. Seeing loved ones and relatives of our own come together and support my mom financially was uplifting last year. I think people find that with this disease, in particular, there aren’t a lot of ways you can support people. Fundraising gives people the chance to walk alongside you. I would encourage you, speak out about your journey. I know I’ll be fundraising every year until there’s a cure.