A 1-year-old Washington state boy battling a rare genetic skin disorder is bathed twice a week in bleach to deter infections, USA Today reported.
Alicia Barber of Chattaroy gave birth to Jamison Stam in May 2017. The boy was born with harlequin ichthyosis, a recessive inherited disorder. Jamison is covered with plates of thick skin that crack and split apart, according to the First Foundation for Ichthyosis and Related Skin Types.
Harlequin ichthyosis affects about one in 500,000 people, according to the National Organization for Rare Disorders.
Jamison was given no chance to live.
"I was severely depressed," Barber told USA Today, "I didn't go to see him. The state felt like I couldn't provide proper care for him at that time."
Jamison was in foster care for five months late last year. Barber went to counseling and said she decided to be "the mom Jamison needed me to be" and take over the boy’s day-to-day care. As a mother to a 7-year-old and stepmother to a 6-year-old boy, Barber knew it would be a full-time job.
Jamison's doctors recommended a bleach bath to prevent infections, but they are painful. Barber gives the child morphine to ease the pain, but worries that it affects his already slow breathing, USA Today reported.
"Some days I wake up and I think how am I going to get through another day," Barber told USA Today. "That small voice says 'Alicia we are going to do this.' … God is carrying me the most."
Barber said she wants Jamison to have “an amazing life,” She has raised more than $38,000 through a
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