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Why I'm Inviting Members of Congress to Meet My Daughter

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Caring for my terminally-ill daughter Cal has made me wiser, braver and kinder than I ever imagined possible. So, two weeks ago, as Cal lay in a hospital bed at the Children’s Hospital of Philadelphia, I wrote a letter to my members of Congress. I invited my senators and congressman to come and spend time with Cal at our home to meet the doctors, nurses and aides who care for her with such devotion.

You see, I believe that if powerful and influential people come and spend time with my daughter, they could learn so much.

An Invitation for Members of Congress to Meet My Daughter

In 2012, I went from being a soccer mom with a minivan to a recipient of public assistance. The fact that my husband and I held advanced degrees, earned salaries that placed us in the top 10 percent of the income distribution and had good insurance benefits from our jobs did not matter when our youngest child was diagnosed with a devastating neurological disorder. A medical catastrophe resulted in us becoming one of the millions of Americans who benefit from Medicaid and the Affordable Care Act (ACA). As a scholar and professor who had written about poverty and inequality in America over two decades, I never imagined that I would join the ranks of the families I studied.

Everything changed on June 28, 2012, the day my youngest child, Calliope — “Cal” — was diagnosed with late-infantile onset metachromatic leukodystrophy (MLD) at age 2. MLD (similar to Tay-Sachs disease) is a degenerative neurological disorder. My daughter no longer had the ability to walk, talk and eat within three months of her diagnosis. Cal was not expected to live beyond the age of 6.

One in 100,000 newborns is diagnosed with Cal’s disease. But even though our daughter’s condition is ultra-rare, the economic situation our family found itself in is hardly unique. More than 25 million Americans are affected by almost 7,000 rare diseases. In 2012, there was no treatment for MLD.

The only thing the doctors could do for us was arrange for a Make A Wish vacation and enroll our family in Medicaid. I asked the hospital social worker, “Why would we need Medicaid?” She explained, “Medicaid provides supplementary insurance to cover expenses your insurance plan won’t.”

It’s been five years and Cal just celebrated her 7th birthday; I am indebted to the American taxpayers for what they have made possible for our family. My husband and I did not have to sell our home or quit our jobs or cash out our 401Ks. We also benefit from the ACA’s concurrent care provision for terminally-ill pediatric patients. Unlike adult hospice patients who must choose between hospitalizations and hospice care, Cal can seek treatment from a specialist and, simultaneously, receive home-based hospice care. Cal’s doctors and nurses coordinate with her hospice team to oversee her care and treatment. Working together, Cal’s doctors and hospice team manage her dozen medications and work to avoid costly emergency room visits and hospital stays. Cal has not been admitted to the ICU in two years.

There is no question that Medicaid and ACA have saved Cal’s life and our family from economic and emotional ruin.

I am writing to invite any member of Congress to our home to spend time with Cal.

You can meet the neurologist who treats hundreds of children like Cal and the aides earning $15 an hour who care for a terminally-ill child with a devotion that will leave you speechless.

When you spend time with our family, I believe you will understand how the policies you debate on the House and Senate floors matter to children like Cal. I believe you will see the immense good the government programs at the center of national debate can do. And I believe you might gain the wisdom and grace you need to act in ways that serve the American people.

Mother and father with daughter in living room. Mother is holding daughter's hand, and all three are smiling. Photo courtesy of photographer Ed Hille
Cal with her parents Maria and Patrick. Photo appears courtesy of photographer Ed Hille.

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Originally published: March 14, 2017
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