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By Rob Thompson

Natalie Weaver’s daughter, Sophia, has Rett syndrome and other conditions that leave her in need of around-the-clock medical care to survive. Sophia needs medication more than 20 times per day and is subject to seizures and breathing problems. Sophia also needs specialized wheel chairs and home and vehicle adjustments so that her parents can move her around the house and take her to doctor appointments.

This level of care is unimaginably expensive and unaffordable even for Natalie’s family, which has a good income and private health insurance. In fact, her private health insurance doesn’t cover the in-home services and equipment that Sophia needs. For that, they rely on Medicaid, which provides critical health insurance for thousands of North Carolina children with special health care needs and disabilities.

Unfortunately, children like Sophia could soon lose this critical coverage. The U.S. Senate is drafting a health care reform bill in secret, and while we haven’t seen the specifics yet, we know that they are taking the same approach as the U.S. House—capping and cutting Medicaid by hundreds of billions of dollars.

For children like Sophia, these cuts to Medicaid could force her out of home and into an institution. She would be separated from the love and care of her mother, father, and siblings. Even worse, she might not be able to get the medical the care she needs.

We think Senators Burr and Tillis need to understand what’s at stake. Please take a moment to call and tell them that they can’t cut Medicaid without hurting children.

Senator Burr: 202-224-3154
Senator Tillis: 202-224-6342

Natalie Weaver is a co-founder of Advocates for Medically Fragile Kids NC, which is dedicated to advocating for the rights and needs of medically fragile children and their families.

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