All any parent wants is for their children to be happy and healthy.
More than seven years ago, my husband and I received devastating news: our perfect baby boy had been diagnosed with a rare, terminal genetic condition called Acid Sphingomyelinase Deficiency (also known as Niemann Pick Disease Type A/B) — ASMD for short.
What made this diagnosis even more difficult was the fact that we found out we were expecting our daughter just three days prior. We quickly learned that any of our offspring has a 25% chance of inheriting this disease. A year later, our beautiful daughter was born, and our hearts shattered for a second time when she, too, was diagnosed with ASMD.
The diagnosis was completely soul-crushing, but the true nightmare came later—learning just how hard we’d have to fight the health care system to keep our children alive.
When our children were first diagnosed, doctors told us they wouldn’t live past the age of three. Today, they are six and seven, growing, thriving, and living full lives in their own beautiful way. Due to the progressive neurological disease from their condition, they are both nonverbal, use wheelchairs, are tube-fed, and require around-the-clock care. Every medication, every feeding, every bath, every shift of their bodies is planned and aided by a caregiver.
It’s exhausting, yes, but everything I do is for my children, and I’m honored to be able to care for them. Every day, I get to witness miracles in motion. They are stable today because we’ve been fortunate enough to have the at-home care they need—care that has only been made possible through Medicaid. It pays for their nursing, their life-saving infusion medications, therapies, and even the specialized equipment that allows us to keep them safe in our home. Without Medicaid, my kids wouldn’t just lose comfort; they wouldn’t be able to survive.
That’s why every time I hear our members of Congress talk about yet another round of “budget negotiations,” “health care cuts,” or about the different ways they plan to make government more “efficient,” my stomach drops and my heart breaks. Parents like me know exactly what these words mean: It means wondering if the treatments keeping our children alive will still be here tomorrow.
Right now, the government shutdown has put programs like Medicaid back on the chopping block. For so many families like mine, the consequences aren’t a number on a spreadsheet; they’re a terrifying nightmare. When Washington freezes, the systems that families depend on slow to a crawl. Our requests for approvals on essential medical equipment and special medications get delayed. And the nurses who support our home care can’t get paid. Every bureaucratic pause adds up to very real suffering for the people at the end of those systems.
But to be blunt, these cuts didn’t start with this shutdown—and re-opening the government won’t magically fix the damage. The cuts have been happening quietly, piece by piece, since the beginning of the year. Every budget that trims “nonessential” services chips away at the fragile scaffolding that keeps children like mine, elders and entire communities alive.
When politicians talk about “reducing spending,” what they’re actually reducing is access to care. They’re talking about fewer hours of care for children who can’t breathe or eat on their own. They’re talking about cutting aid to parents like me who have been forced to quit our jobs to become full-time caregivers. They’re talking about families bathing their disabled children in unsafe ways because the home modification grant they were promised is still waiting for approval.
It took me years to learn how to navigate the health care system. Every form, every appeal, every phone call feels like a test of endurance. And still, even with all that effort, I live in constant fear of what might be taken away next.
Families like mine are already doing everything we can to hold our lives together, to keep our children safe, comfortable, and cared for.
We shouldn’t have to fight this hard for care that should be a basic human right. My children and so many others like them deserve better.
It’s time for our leaders to stop treating health care as a bargaining chip.
This story is republished from the Ohio Capital Journal. View the original article.
