One day, Paulette Shannon’s life changed forever. Her son, Daymond, was diagnosed with Ataxia shortly after suffering a seizure.  

What You Need To Know 

National Ataxia Day was September 25, 2022 

Ataxia affects one in every 50,000 people  

Daymond was diagnosed with ataxia at age 14 

Paulette Shannon recalls the day in particular. They were on their way to a restaurant in Winston-Salem when her son walked into the window and started having seizures on the ground. 

After that, they went to the hospital and followed up with his doctor to receive the news that he had Ataxia. 

Ataxia means without coordination and those who have it, have difficulty walking, speaking and overall, they may not be able to take care of themselves. 

“Daymond can no longer feed himself, he can no longer toilet himself,” Paulette Shannon said. “They did an evaluation of him for thinking and critical skills, and he failed it. He will never be able to live on his own. My son will always live with me, he will never go into a nursing home.”

Paulette Shannon said since his diagnosis, she's been educating herself to know more about Ataxia, so that she can give her son the best care possible. 

When the doctors told her he had Ataxia, she says they weren’t able to tell her the specific type he had because her insurance didn’t cover it. Without insurance coverage, she says it can cost upward of $10,000. 

She and Daymond’s neurologist made phone calls to see if there was anyone who could help them and cover the cost. 

“She called, she said 'are you sitting down?’ I said yeah. She said, ‘Well, I found somebody to sponsor Daymond’s blood test.’  It was so much weight lifted off my shoulders because we’re getting somewhere.”

After hearing the news that someone would sponsor Daymond’s test, she decided to see if there was a national organization and sure enough there was. 

Once she found the organization, National Ataxia Foundation, she saw that national Ataxia day was September 25, 2022. She wanted to put on a walk for her community to bring awareness to the disease. 

She planned the walk for a couple months and was able to walk with her friends, family, and of course Daymond. Paulette Shannon says she will continue advocating for those with Ataxia until there is a cure.