Becker family at critical juncture, need for community’s help dire

Atlas Becker will celebrate his first birthday in a few days. While his daddy, Ryan, holds him and loves him every day, Atlas has never known a moment that his daddy hasn’t suffered the most excruciating pain imaginable to cradle him … he only knows Daddy holds him.

Ryan’s doctors can’t imagine his level of pain … it’s off the scale and incessant … he gets no relief. And still he holds his son and his beautiful wife, Mikkel.

For the past year, Ryan has been fighting a combination of illnesses that together would break most people: pyoderma gangrenosum, severe adrenal insufficiency and autoimmune encephalitis.

Ryan isn’t just another patient with PG. He is the only person ever documented to have all three subtypes of the disease at the same time.

His physician, Dr. Ortega at Oregon Health and Science University, is widely regarded as the world’s leading expert on PG. He sees around 40 new PG patients every month, while most dermatologists will see one or two in their entire career. Dr. Ortega has said Ryan’s case is the most severe he has ever seen.

Ryan lives with what many doctors call the most painful condition known to man. His case stands as the most severe ever documented, with all three subtypes — pustular, bullous, and ulcerative — active and consuming at once. The lesions cover his shoulders, scalp, thighs, and even the inside of his mouth, each one a wound that refuses to close, a fire that refuses to die.

The pain never stops. There are no pauses, no grace periods — only the steady, brutal rhythm of a body that burns as it heals and heals as it burns. His case stands as the edge where medicine ends and survival becomes an act of defiance.

He takes doses of steroids powerful enough to silence immune storms, yet the inflammation always returns, unyielding. In the midst of that endless pain, he sometimes longs for the fog of autoimmune encephalitis or the collapse of adrenal insufficiency. Not because they bring relief, but because they take away memory.

For a brief moment, he doesn’t have to remember how much it hurts. And still, he lives with purpose. He is a husband, a father, a friend.

Mikkel has returned to work, mostly from home, to keep their household going while also caring for both Atlas and Ryan, who cannot safely be left alone. These are long, hard days, with her commonly having to get up at 3:30 a.m. and drop into bed at 11 p.m. just to meet the grueling demands of caring for those who need her.

Every dressing change costs $38 to $42 and needs two to five changes every day. Insurance covers only 12 silicone dressings per month.

Ryan has improved since going under Dr. Ortega’s care, which requires a monthly trip to Portland, but he’s nowhere near a cure. He still has health insurance, but out-of-pocket expenses, over $50,000 this year, continues to climb precipitously and family resources are nearly spent.

Worse, the clinical trial that provided the experimental medication he’s on, Trefya, is ending, with only a single dose left. He faces losing the medicine that’s been keeping him alive at a cost of $22,600 per month. Because this use is off label, insurance is not required to cover it. His doctors are filing appeals and trying to obtain compassionate use coverage, but those processes take time that Ryan does not have.

A GoFundMe account, www.gofundme.com/f/ryanandkel, established early on has raised over $93,000 in donations so far, each appreciated by the Becker family from the bottom of their hearts. But they need about $400,000 to buy the next dose of Treyfa. To buy Ryan the days and weeks needed for appeals and compassionate access to play out. It buys the next set of dressings. It buys the next trip to OHSU. It buys hours that Ryan can spend as a husband and a father.

There’s no easy way to say it, but without a significant amount of money raised quickly, Ryan will die. Please give, and please share this fundraiser.

https://www.gofundme.com/f/ryanandkel

mdw