Help Us Hold On: Supporting Damian's Care and Our Survival

I never imagined I’d have to ask like this, but the safety net we’ve depended on to survive is quietly being pulled away.

Many of you know that I’m a full-time caregiver for my son, Damian. After surviving a heart transplant, he’s now on dialysis as we wait for a kidney. I’ve been providing his care through a state-funded home program. This work isn’t just a job; it’s my income, and how I support both of us. We live simply and stretch every dollar, but with recent federal policy changes, that fragile balance may collapse.

Damian’s care is funded through a program that receives support from the federal government. I was interviewed, trained, and approved to be contracted through the state to provide part of his daily care. Now, under new CMS proposals, non-medical home care services like mine may no longer be covered. If this change goes through, I could lose my only income. That isn’t just a paycheck. It’s the foundation of our home, our food, our security.

I can’t just “get another job.” Damian needs full-time care, and there’s no one else to do what I do. Last year alone, I took him to nearly 200 medical appointments and treatments. That doesn’t include any of the daily support he needs after a stroke and paralysis following his transplant. And that was our easy year - just trying to keep him healthy enough to qualify for a kidney.

I don’t need luxuries. I just need enough to keep our insurance, our home, and our stability while we wait for him to be listed and figure out how to move forward.

I’m asking for help, however small, to build a safety net.

If you can donate or even just share this with someone who might be able to help, it means everything. We’re not giving up but we could use a little help so we don’t have to fight quite so hard to stay afloat.

Thank you for reading, for caring, and for supporting us in any way you can.

With love and gratitude,

Shari and Damian