With Medicaid cuts looming, NC mom takes fight for medically fragile daughter to DC

Weaver family (Photo courtesy Natalie Weaver/WBTV)

CORNELIUS, N.C. (WBTV) – A plan to massively slash Medicaid could have an effect on medically fragile children in North Carolina.

Last year, Natalie Weaver fought to keep a state program that helped provide medical funding to the severely disabled. She won that battle, but is now taking her fight to Capitol Hill.

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Natalie’s daughter, Sophia, suffers from Rett Syndrome and another unknown illness that has taken her ability to walk, talk and do anything on her own. She has severe deformities on her face, hands, and feet and has endured 21 surgeries in her eight short years.

“Because of her strength, she has taught me to fight. Because of who she is, she has made me a better human being,” Weaver said.

Sophia may not be able to say it, but Natalie knows her little girl is proud of her.

“We’re in a place right now where we are fighting for people’s lives. For people with pre-existing conditions, for the most vulnerable human beings in the United States,” Weaver said.

Sophia requires thousands of dollars of around the clock care per month that’s provided in part by a state CCAP program, which is funded by Medicaid.

“We do have private insurance and my husband has a great job. Despite that, we would not be able to afford the medical bills,” Weaver said.

But two weeks ago, President Donald Trump’s plan to cut Medicaid funding by $800 million took Weaver out of Cornelius and to a press conference on Capitol Hill.

“I know that one day I will lose her to one of her conditions. My heart will be absolutely shattered when that day comes, but if I lose my sweet Sophia because our government decided that her life wasn’t important enough to protect, that will destroy me,” she said in Washington.

Weaver says if the American Health Care Act passes, her daughter and thousands of others could be forced into institutions.

“I cannot imagine putting her into an institution. Because she is so medically fragile, she would actually die,” Weaver said.

While in DC, Weaver met with North Carolina Sen. Thom Tillis who supports the cuts. But Weaver is determined to sway his opinion and anyone else who stands in her way.

“I want to change his mind, so I intend to invite him over for coffee,” she said.

Senator Tillis’ office did not immediately respond to WBTV’s request for comment.

For more information about Weaver’s efforts, visit www.advocatesformedicallyfragilekidsnc.com.

Copyright 2017 WBTV. All rights reserved.

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