VERMILLION, S.D. (KCAU) – A South Dakota woman has spent months raising funds to support a trip to the nation’s capital, hoping to speak to lawmakers about CMT, a nervous system disorder. When she wasn’t able to raise enough to make the trip Congressman Dusty Johnson came to her instead.
“It won’t break me. I tell people all the time I have CMT, but CMT does not have me,” said Clarkson.
Serena Clarkson was officially diagnosed with Charcot- Marie- Tooth Disorder in March of 2010. Since then, she has undergone 79 medical procedures.
“When I step down on smooth land, every time I step down, it is like shards of knife with every step. The pains med help take away some, but it doesn’t do anything,” said Clarkson.
Since Clarkson’s diagnosis, she has been on a mission to advocate for everyone dealing with these kinds of debilitating diseases.
“She’s been down a lot in life and she has gotten up every single time. She has weathered storms that most of us can’t imagine, and that has given her an inter steel, an inner strength, and a voice that you know is truth,” said Congressman Johnson.
Clarkson is working to share her story and speak for those with similar disabilities who aren’t able to say what they need.
“People with neuromuscular diseases need someone to advocate from them. There are accommodations that should be granted to us that we are not getting, the traveling, the benefits for people on duchenne that are waiting for those of us with neuromuscular diseases that aren’t gonna have a long life. Waiting to get help isn’t an option,” Clarkson said.
It’s why representative Johnson came down to Vermillion to hear her story and how lawmakers in Washington can help.
“You don’t want a handout. What you want is an opportunity to work. What you want is an opportunity to live an independent life. What you want is an opportunity for people, is future generations to not be burdened by the pain you have been burdened by. The fact that your message is one of empowerment Serena, makes it killer powerful,” said Johnson.
Congressman Dusty Johnson and Serena made plans to visit other lawmakers in the future to continue to share her story. She still working to raise funds to get to Washington D.C.