Help Spuddy Fight Calciphylaxis

Help Us Save Spuddy — A Deaf Father Fighting a Deadly Disease Most Doctors Give Up On

From his family — Keith (brother) & Kenneth (father)

Kenneth “Spuddy” Crowell, born in November 1971 (currently 53 years old), is a devoted father of three and one of the most vibrant, big-hearted souls we know. Right now, he’s fighting for his life against a devastating disease called calciphylaxis — and we’re terrified the system is giving up on him far too soon.

Calciphylaxis is a rare, aggressive disease that causes skin and tissue to die from the inside out. The pain is excruciating. The wounds are spreading. And most patients don’t survive unless they get aggressive, specialized care — fast.

Spuddy is Deaf. And while he’s had interpreters throughout his care, that doesn’t mean he’s been fully understood — not in the ways that truly matter. Medical language doesn’t always translate into American Sign Language (ASL) word-for-word — terms like “calciphylaxis,” “vascular necrosis,” “sodium thiosulfate,” and “parathyroidectomy” don’t always have direct ASL equivalents. That means crucial explanations of his condition and care may have been lost in translation — not because of a lack of intelligence, but because of how language works when you live in a world built around sound.

And this is where it gets worse.

He’s covered by state health insurance, which limits his access to top-level care. The doctors currently managing his case seem to have already resigned themselves to “managing” the disease — not curing it. But we believe in second opinions, in more aggressive treatment, in life.

This isn’t the time to settle for less.

This is the time to fight harder.

And for that — we need your help.

What We’re Raising Funds For:

Advanced calciphylaxis treatment centers that go beyond basic wound care and offer potential cures, not just palliative management

Specialist consults in vascular surgery, nephrology, and hyperbaric oxygen therapy

Travel and lodging costs if he needs to be relocated for better care

Out-of-pocket medications, wound supplies, supplements, and nutritional therapies

A communication advocate who is Deaf-aware and fluent in medical terminology and ASL nuance, to ensure every conversation Spuddy has is clear and complete

Basic support for Spuddy’s three children as his condition prevents him from working

We Are Not Accepting a Death Sentence

Too often, care teams look at someone with complex needs — a rare disease, a disability, a tight insurance plan — and quietly stop fighting. We’re told, “There’s nothing more to be done.”

But we don’t accept that.

Because Spuddy is still here.

Still laughing when he can. Still showing love. Still alive.

In a situation this dire, you don’t rely on one voice. You build a choir.

We want to give Spuddy every possible chance — the same chance anyone else would get if they had money, clearer language access, or better systemic support.

This Is About Justice. Dignity. And Life.

Spuddy deserves to know every option.

He deserves a team that’s still trying.

He deserves life.

Please help us — his brother, his mother, his kids — fight back.

We’re asking for donations, shares, connections, prayers, and leads. If you know a medical team that specializes in calciphylaxis, a hospital willing to review his case, or an advocacy group for Deaf patients in critical care — we are all ears and open hands.

Let’s rewrite the story the system wants to end.

Donate. Share. Be part of this fight.

With love and hope,

Keith (brother) & Kenneth (father)