9-Year-Old With Rare Skin Disease Speaks From a Summer Spent in the Hospital

A 9-year-old boy who has spent nearly his entire summer in the hospital looked into a camera and asked strangers for something simple and heartbreaking: “Please pray for me.”

Jamison was born with harlequin ichthyosis, a rare and severe genetic skin condition that causes the skin to grow abnormally thick and tight. Patients are left vulnerable to painful cracking, infections, and trouble regulating body temperature and hydration. He has lived with the disorder his entire life.

This summer, his mother, Alicia, says, has been the scariest stretch they have ever faced.

“I have been in the hospital for this whole summer,” Jamison says in the video. “I got nothing to do… it doesn’t make me happy.” Then he adds words that are difficult to hear: “I really am not happy about my life. This is the worst life ever, and it feels like hell.” And again: “Please pray for me.”

Two days before he recorded that message, Alicia says, his symptoms became so severe that even his pain medications at their maximum prescribed doses were not enough. He was crying, vomiting, and saying things that broke her heart. He is also fighting two bacterial infections that are taking a heavy toll on an already fragile body.

“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,” Alicia shared. “Mentally, physically, and emotionally.”

Jamison is more stable today. The family now faces another hard moment. Alicia says she is preparing to sit down with 12 specialists, along with hospice and palliative-care teams, for what she calls a “care moving forward” meeting.

“I’m so not prepared.”

She has said she will keep sharing the difficult parts of her son’s journey because this is their reality. Right now, she says, they do not need judgment. They need what Jamison asked for.

Source: Public video and statements shared by Jamison’s mother, Alicia, describing his hospitalization and request for prayer.