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Tuesday, February 7, 2017

Repeal of the Affordable Care Act Threatens My Daughter’s Life

This afternoon, House Democrats, parents, advocates, school nurses, and others will gather on Capitol Hill to discuss how repealing the Affordable Care Act puts millions of our nation’s children in the crosshairs. The ACA, Medicare, Medicaid, and the Children’s Health Insurance Program (CHIP) provide vital access to health care and robust protections for children. 

Maggie C.'s daughter Evelyn is just one child who would be affected. She recently shared her family’s story with us. Learn about the campaign to Protect Our Care or tell your lawmakers to insist on a plan to replace the ACA that guarantees the same number of people will be covered and the same consumer protections. 

Pre-existing conditions and lifetime maximums are just words and talking points for some. For my daughter, it is life and death. 

On May 23, 2016, at 5 months pregnant, I was told that there was a problem with my daughter's heart and was referred to a pediatric cardiologist. Two weeks later she was officially diagnosed with Hypoplastic Left Heart Syndrome. I was given two options for my beautiful rainbow baby: I could terminate the pregnancy I had so desperately wished and prayed for, or I could carry her to term and they would attempt to save her life. I chose the latter. 

On September 7, 2016, I welcomed the most beautiful little girl into the world, one who is perfectly imperfect. Six days later, she had her first open heart surgery. We were in the hospital for 49 days while she recovered. On December 29, 2016, she had her second open heart surgery. 

As I write, we are still in the hospital, unsure if she will recover due to complications because she caught a cold. A simple cold that has left her unable to breathe without a ventilator and left me, her father, and our families and friends unsure if each day will be her last. 

As you can imagine, this is expensive. Without insurance, my daughter would have died. 

Without the Affordable Care Act’s protection, insurance companies could have labeled her condition as preexisting and refused coverage. 

Without the Affordable Care Act’s protection, her lifetime maximum would have been met within her first 3 months of life. 

We're still not out of the woods yet. She will have to take medication for the rest of her life. Between the ages of 2 and 5, she will have to have a third open heart surgery, and eventually, my beautiful, vibrant daughter will have to have a heart transplant. It could be tomorrow. It could be years from now. 

As I sit by her hospital bed, I should be focusing on her treatment and getting her better. I shouldn't be worrying about insurance and coverage and paying million-dollar hospital bills. 

Like a thief in the night, Congress has begun the process of stealing her benefits while I tried to get the few hours of sleep I manage each night in her hospital room. 

This is not a political game for me! This is my daughter’s life!

They are effectively telling me and families like mine that my child's life is not worth saving because I am not a part of the less than 1% elite who can afford these treatments out of pocket. They are telling me that insurance companies are allowed to put a limit on the value of her life. 

I can assure them that her life is PRICELESS!  

They are telling me that I should have to watch my daughter die because I may no longer be able to afford to save her. 

I am begging them not to do this. I am pleading with them to allow me to protect her as best as I can. I am not strong like her. I am weak, and I will not survive losing her.

Learn how you can share your family's health care story