When people first heard about Camden’s diagnosis—and even now—we always hear the same things:
“I don’t know how you do it.”
“Camden is so lucky to have such amazing parents.”
“How can I help?”
The truth? We don’t know how we do it either. We put out fire after fire, barely coming up for air. And when we do, we see Camden’s beautiful, smiling face—so proud after zipping up his pajamas for the first time. That moment, that tiny victory, gives us the strength to keep going.
But make no mistake—it’s a grind. A brutal, exhausting, all-consuming grind. Sara hasn’t slept through the night in over a year. Most nights, I don’t either. Our arms and shoulders bear bite marks and scratches, constant reminders of Camden’s struggles. We’ve been changing diapers and washing bottles for three years with no end in sight.
This is our reality. We survive it, but that doesn’t mean it’s easy.
And lately, as we barely catch our breath, we’re blindsided by news that takes it away.
A Constant Barrage of Attacks on Camden’s Future
Everywhere we turn, another pillar of support is being ripped away. Another fight we didn’t ask for but have no choice but to engage in.
Medicaid Cuts: Stripping Away a Lifeline
The House just passed a budget resolution that slashes $880 billion from Medicaid over the next 10 years. They claim it’s about eliminating fraud, but the reality is this: real people will lose care. Real families will lose support.
For families like ours, Medicaid waivers are a lifeline. They provide access to therapies, medical supplies, and respite care—things we will need for years to come. We are already number 691 on the autism waiver waitlist. These programs aren’t luxuries; they’re necessities. Without them, families like ours are left scrambling, alone.
NIH Funding Cuts: Delaying the Science That Could Save Camden
This one cuts deep. The very research that could lead to treatments for SYNGAP1 is now in jeopardy.
The discovery of SYNGAP1 was made possible through NIH funding, and today, countless researchers rely on these grants to advance our understanding of the gene and develop potential therapies.
These cuts don’t just slow research—they delay hope. Hope for a treatment. Hope for a breakthrough. Hope that Camden’s future won’t always be filled with seizures, developmental delays, and daily struggles.
Time is everything in rare disease research—every funding cut moves the finish line further away.
FDA Staffing Cuts: A Broken Approval System Before We Even Get There
The FDA is losing the very experts who review and approve life-saving therapies. These are the people who would one day greenlight a treatment for Camden, and now they’re gone.
Even if treatments are developed, who will be left to approve them? Without proper staffing, the process will stall, leaving families like ours in limbo.
The Celebration of the End of DEI & The Lawsuit to End the 504 Program
Some people are rejoicing over the rollback of Diversity, Equity, and Inclusion programs. But let’s be clear: Camden is the “I” in DEI.
Inclusion means ensuring children like Camden have a place in schools, in communities, in workplaces. When people celebrate the end of DEI, are they celebrating the exclusion of children like him? Because that’s what it feels like.
And the attack doesn’t stop there.
The state of Kansas has joined a lawsuit seeking to end Section 504 protections, the very program that ensures children like Camden receive accommodations in school—whether it’s extra time for tasks, sensory-friendly environments, or other necessary supports.
Without 504 protections, many kids with disabilities will struggle even more to access education. It’s terrifying to think that the few legal safeguards ensuring Camden’s inclusion could be erased with the stroke of a pen.
How You Can Help
So when people ask, “How can I help?”—here’s the answer.
Understand we are always in crisis mode. This isn’t a rough patch; it’s life. Camden doesn’t get a break, and neither do we.
Educate yourself. Read articles, listen to podcasts, watch videos about rare diseases. Don’t just say, “I don’t know how you do it”—try to understand what it actually is.
Speak up. When you hear someone making ignorant comments about Medicaid, special education, or DEI, don’t let it slide. Advocate. Educate. Challenge misconceptions.
A Call to Action
We cannot afford to sit back and watch as the little support we have is stripped away. Every single one of these cuts is a direct attack on the future of kids like Camden.
If you love someone with a disability, if you care about children like Camden, if you believe in a world where no child is left behind—now is the time to stand up.
Call your representatives.
Ask them what they are doing to protect Medicaid.
Demand answers about NIH funding.
Let them know we are watching, and we will not be silent.
Camden’s future—and the future of so many children like him—is being threatened from all sides. We don’t have the luxury of ignoring politics when the policies being decided actively harm our child.
We are tired. We are overwhelmed. But we will never stop fighting.
If you’ve ever wondered how you can help, this is it. Stand with us. Speak out.
Because Camden—and so many kids like him—deserve better than this.
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Well said – all of it!