Dexter Williams Helps Share Story of Rare Disease
GREEN BAY, Wis. – “A Mystery to Me,” a documentary about myasthenia gravis, hits home to Green Bay Packers running back Dexter Williams.
Literally.
Williams’ mother, Cheryl, was diagnosed with myasthenia gravis in 2006. Born and raised in Orlando, Fla., Williams has brought his mother along for his NFL ride to Green Bay.
“She’s my best friend,” Williams said.
MG is a rare, chronic autoimmune disease that causes debilitating and potentially life-threatening muscle weakness. Cheryl Williams started feeling symptoms in 2004. It took two years and countless trips to doctors and specialists to finally get the correct diagnosis.
That search, and her mom’s story, spurred the Williams’ involvement in promoting the documentary that premiered on Tuesday.
“Me and my mom have been wanting to spread information about myasthenia gravis,” he said. “Just growing up, we didn’t know. We couldn’t pinpoint exactly what was going on that was wrong with her. We had to go to different doctors to find out. He’s finding something different or she’s finding something different. It was a lot of visiting different doctors. Nobody knew what was going on. Finally, we were able to piece the puzzle together and found out it was myasthenia gravis.”
Cheryl’s life-changing diagnosis came when Williams was only 9. Through the years, he watched his mom’s health slowly deteriorate because of MG. When he was 14, he came home from school and found his mom unresponsive. She spent three months in a coma. The family discussed taking her off life support, only to have her come out of the coma.
While her health has changed, her outlook on life and fighting spirit haven’t wavered.
“Growing up for me, at first, it was different,” he said. “My mom was athletic. We used to do a lot of things together. We played around the house, my mom would sing songs. We spent a lot of time together. She made the house feel like a home. She kept the home running. She was always there, always providing.
“Toward that middle-school and high-school time of my life, that’s when everything hit. I had to become the caregiver. I had to become the parent and she was the child. Everything that she would do, I had to take her role. I was the baby in the family so there was a lot of stuff on my plate and my dad’s plate. On top of that, I was playing football, still going to school, still making sure I could go to college. It was a lot to deal with it but we managed to get through it.”
Williams rushed for almost 2,000 yards during his final two years of high school and earned a scholarship at Notre Dame. When his career hit a rough patch as a senior, his mom was there for him, moving from Orlando to the South Bend, Ind., campus. Now, Williams is there for his mom. She splits her time between Green Bay, where she lives with her son, and Orlando, where she returns for treatment. The financial resources of being a professional athlete have ensured she’s taking her medicine and getting regular treatments.
“She’s doing pretty good,” he said. “She has her days. She has a lot of ups and downs. But you can expect to get that same person each and every day. Every morning, she’s going to be smiling whether she’s happy, sad. No matter how her body is feeling that day, she’s going to wake up smiling, full of energy, and it motivates me to have the best day I can have. She turns that negative feeling and that negative energy that’s in her body and turns it into something positive.”
Williams said his mom compares having myasthenia gravis to a snowflake.
“A snowflake, it looks like everything is so good on the outside and everything is shaped perfectly,” he explained. “But on the inside, you can’t see what’s going on and it vanishes and washes away. Each and every day, it can be something different. And then it washes away to something different the next day. It’s pretty special how she puts it.”
“A Mystery to Me” is the first documentary series about myasthenia gravis. It reveals the hidden toll of the unpredictable illness by following three people who live through it every day.
“It shows the struggles and challenges they face on an everyday basis,” Williams said. “It shows how myasthenia gravis affects not just them but the people around them. It takes you into their world. Every person’s story is different because they don’t have the same symptoms, their treatments may be different. You get a taste of three people’s lives and it’s so heart touching.”
For more about myasthenia gravis and to view the documentary, go to MG-United.com.
