WENDELL, N.C. – A mom is writing to Congress in an attempt to create a healthcare system change after her daughter died from an undiagnosed blood clot.

What You Need To Know

  • Leoma Wilson is proposing a bill, advocating for a medium of better communication between patients and their doctors

  • A mom says her daughter was not taken seriously after back-and-forth visits to the emergency room 

  • Family and friends will march in downtown Raleigh to raise awareness in honor of Shania's birthday on June 9

Leoma Wilson said her and her daughter visited the emergency room four times, and a doctor's office once in one week before her daugher, Shania Wilson, died at 20 years old.

"She was in pain and dying within that week, and they were telling me nothing was wrong with her," Wilson said.

Shania Wilson passed away on March 1, 2020. Her mom said she was on the autism spectrum and had an intellectual disability.

She was able to talk, but describing the specifics was hard for her. Leoma Wilson said her daughter just moved into an apartment, living mostly independently, with some roommates.

Leoma Wilson said when she called the ambulance, and emergency workers didn't respond the way she anticipated.

"I was trying to tell them that this is not normal for her, but they were treating it like, 'Well I got a special needs child'," said  Leoma Wilson. "I mean they were just undermining the whole situation and making it less than what it was. It was an emergency. I was taking her to the emergency room. I called the ambulance. It was an emergency and they were not treating it as if it was an emergency, and that is the thing that bothers me the most."

Of the five visits, Leoma Wilson said one doctor did a CAT scan that showed some constipation. After the issue persisted, she returned but there was no other diagnosis.

"She kept saying, 'I'm in pain.' I was taking her," said Leoma Wilson. "She was saying it in the way she knew how, but it's like no one was listening to us."

Now, Leoma Wilson is writing to Congress to propose a bill called the Nia Bill. The bill targets helping people in the non-verbal community or people who have a complexity with communicating effectively.

"We need some type of translation or device or something that's going to be able to help the doctors and the patient have a higher communication and understanding," she said. "They accommodate anyone else, so why is this community not accommodated?" 

U.S. Senator Richard Burr wrote back to her. 

The letter read:

"I have long believed that reform of our current health care system is necessary, and action must be taken to ensure Americans have access to high-quality and affordable health care," said Senator Burr. "As a member of the Senate Committee on Health, Education, Labor, and Pensions (HELP), you can rest assured I will keep your letter in mind as my colleagues and I continue to work on these issues."

Shania Wilson's birthday is June 9, so this year her mother will lead a march in downtown Raleigh in honor of her. Leoma Wilson said she does not want any parent to experience what she has gone through.