Each of the finalists for the 2017 Uplifting Athletes Rare Disease Champion Award will be featured here. In order to cast your online vote to help determine the 2017 Rare Disease Champion, you can visit our voting page.
University: University of Notre Dame
Vitals: 5-11, 210-pound running back
Quick Hits: The native of suburban Orlando, Florida came to Notre Dame as a Top 125 player overall in the 2015 recruiting class. … Because of injuries at the running back position, was forced into a full-time reserve role on the depth chart as a true freshman in 2015. … Scored his first college touchdown against UMass as a true freshman. … Averaged more than 7.1 yards per carry as a high school senior at West Orange HS with 10 touchdowns. … Saw action in all 12 Notre Dame games as a true sophomore in 2016 totaling 200 yards with three touchdowns and averaged a respectable 5.1 yards per carry. … Had a career best 80 yards on the ground October 1, 2016 in a victory over Syracuse.
INSIDE THE STORY
Normally, when any player receives an offer from Notre Dame and he wants to play for the Fighting Irish, the decision to head to South Bend, Indiana is pretty easy. That wasn’t the case for Dexter Williams.
In order to pursue his dream of obtaining a degree from Notre Dame and playing for the Fighting Irish, Williams had to leave the side of his mom Cheryl in Florida.
After battling this rare disease for nearly a decade, there is a level of familiarity for the Williams family. But for most of those years, Williams and his mom walked through it together. Now, Cheryl and her son are nearly 1,200 miles apart most of the year.
Like any mother would be, despite her personal struggles with a rare autoimmune disorder called myasthenia gravis, Cheryl was thrilled for Dexter’s opportunity at Notre Dame.
Inspiration comes in many shapes and forms. And in this case the extremely tight relationship between Williams and his mother serves mother and son well on so many fronts.
The two still talk almost every day and any chance Williams gets to play in front of his mom is special. Because of her struggles with her rare disease, she can’t travel much. Even seeing him play in high school was difficult.
But earlier this season, Cheryl was in good enough health to make a trip to Notre Dame stadium for its game against Duke. Williams not only played in the game, he scored the third touchdown of his young Notre Dame career on a 13-yard run with his mom in the stands.
And after he crossed the goal line, Williams pointed right at his mom who was crying in her seat. Those types of moments might appear fleeting to some, but for the Williams family they are the ties that bind.
THE RARE JOURNEY
Cheryl was diagnosed with myasthenia gravis following a series of strokes in 2006. The Williams family has endured the fight with this rare disease for more than a decade.
This particular neuromuscular disease is long term and leads to varying degrees of disconnect between the nerves and voluntary muscles. It results in weakness of the legs, arms, causes double vision, drooping of the eyelids and makes it difficult to chew, speak, swallow and breathe.
Cheryl Williams undergoes regular chemotherapy and plasmapheresis treatments that require hospitalization every three or four months.
While some symptoms and complications from this rare disease are treatable, a myasthenia crisis is a life threatening condition that affects breathing.
That’s what happened to Cheryl Williams in 2010.
Williams came home from school and as he went down to give his mother a kiss, he found she was unconscious laying on the couch. Cheryl was rushed to the hospital and spent nearly three months on life support.
Less than 24 hours before the family was going to turn off the machines, Cheryl woke up. And right there by her side was Williams, tears streaming down his face telling his mother “not yet.”
The distance between Orlando and South Bend has been difficult for both mother and son equally. But through this decade-plus rare disease battle they each have provided the other with hope and determination to keep fighting the battle.
WHAT THEY SAID
“I watch every game, some during treatments with the doctors and nurses. They all know him. There is nothing greater than seeing him and the joy in his eyes when he’s given the chance to play. I literally cry like a baby when he’s playing, but simply out of joy and gratitude.” – Cheryl Williams