9-Year-Old Boy With Rare Skin Disorder Shares Heartbreaking Plea for Prayers

Nine-year-old Jamison Stam of Mead, Washington, has spent his entire life battling a rare and painful genetic skin disorder. Born in 2017 with Harlequin ichthyosis, Jamison faces skin that becomes abnormally thick and tight, leaving it vulnerable to cracking, infection and serious complications.

Doctors once did not expect him to survive infancy.

For the past nine years, his mother, Alicia, has watched her son endure hospitalization, pain and the daily challenges of living with a condition that affects his skin, temperature regulation and ability to retain moisture.

But Alicia says this past summer was unlike anything they had experienced before.

Two days before Jamison recorded a video that was later shared publicly, his pain became overwhelming despite his medications. According to his mother, maximum doses were no longer providing enough relief. He was crying and vomiting while also battling two bacterial infections.

In the video, Jamison spoke openly about what the prolonged hospitalization had been like for him.

“I have been in the hospital for this whole summer. I got nothing to do. It doesn’t make me happy.”

He then described the emotional toll of living with constant illness and pain.

“I really am not happy about my life. This is the worst life ever, and it feels like hell. Please pray for me.”

For Alicia, hearing her son speak those words was devastating.

“In all of these years going through this, I can say this has by far been the scariest and worst experience for the both of us,” she wrote, describing the ordeal as difficult “mentally, physically, and emotionally.”

Jamison is now stable and back home after that difficult stretch, but his family knows the road ahead remains uncertain.

Alicia is preparing for a major meeting involving about a dozen specialists, along with hospice and palliative-care teams, to discuss Jamison’s care and what the next stage of treatment and support should look like.

“I’m so not prepared,” she said.

Despite the fear and uncertainty, Alicia continues to share Jamison’s story publicly. She says showing the reality of his condition—including the moments that are painful and frightening—is important because pretending everything is easier than it is would not help her son.

For Jamison, the message is simple: he wants people to understand what he is going through, and he has asked for prayers.

His story is a reminder of the enormous physical and emotional burden that rare diseases can place on children and their families—and of the strength required to keep going when every day brings another challenge.

The family is now asking supporters to keep Jamison in their prayers, especially for relief from his pain and for wisdom as his medical team and mother make difficult decisions about his future care.