I am the mother of a precious eight-year-old boy named Grayson who lives with a rare genetic condition that affects every cell in his body and every aspect of his life. Born with one tiny mutation on his fifth chromosome, Grayson is unable to walk, talk, sit up on his own, eat or learn like a typical child his age.
Grayson requires a feeding pump to deliver nutrition through a tube in his stomach, a wheelchair to navigate through the world, night nurses to monitor him for aspiration and a medicine cabinet full of drugs that resembles a small pharmacy. He receives physical and speech therapy twice a week to keep his body functioning at its full potential. When Grayson catches a virus, we don’t have the luxury of simply keeping him home from school to recover — it’s a mandatory hospital stay for fluids and monitoring.
Ours is the life of a family with a medically fragile child, and we are one of thousands of families across this country facing similar circumstances. We fiercely love our children and diligently take care of them day after day, year after year. But what many people don’t realize is that the expense of caring for a child with this level of medical needs exceeds our family’s income. We rely on insurance coverage, as well as Medicaid, to keep our children alive.
Grayson is so much more than his health conditions; he is a whole person with preferences, emotions and dignity. He loves listening to music, giggling with his siblings, riding the school bus and cuddling with his mama. However, there are politicians in this country who, with their relentless attempts to undermine the Affordable Care Act, dehumanize my son by seeing him as nothing more than a list of pre-existing conditions. Our country’s founding documents claim one of America’s core values is “all men are created equal,” but that’s not really true, is it?
There are elected leaders across the nation who, with their votes, send a message loud and clear: my son’s life is expendable. His existence in this country is a burden, and keeping him alive with any basic quality of life isn’t worth a cut in profits for insurance companies.
Texas Attorney General Ken Paxton, along with attorneys general and governors of 20 American states, are currently trying their best to eliminate protections in the Affordable Care Act for people with pre-existing conditions. If successful, this means that while Grayson may still technically be covered by an insurance policy, that policy won’t be required by law to actually pay for the health care he needs. We are not a family trying to cheat the system. We are hardworking Americans who pay large monthly premiums to an insurance company that holds the fate of our child’s life in its hands.
My son is a living, breathing human being. His life is just as worthy as that of an insurance company’s CEO or the state attorney general. There is no limit to the value of his life, even though politicians and corporations are hellbent on trying to set one.
If we become a nation that refuses to care for the sick and disabled, where only the rich can afford medical care, we will never be great. Children like Grayson will continue to pay the price for the greed of those determining whose life is worth saving.
Please call your representatives today and urge them to protect people living with disabilities and pre-existing conditions as required by the Affordable Care Act. Access to quality health care should be a human right afforded to every American. Grayson’s life, as well as the lives of thousands of medically fragile children nationwide, is worth saving.