A mom from Washington state bathes her 1-year-old son in bleach twice a week, because she wants him to defy the odds for children born with his rare genetic skin disorder. She wants him to live a long life.
Alicia Barber gave birth to Jamison Stam, who has harlequin ichthyosis, in May of 2017. Photos of the newborn show an infant clinging to life covered in a patchwork of skin and sores.
Harlequin ichthyosis is a rare genetic disorder that covers infant’s skin with hard, thick diamond-shaped plates separated by deep cracks, according to the U.S. National Library of Medicine. The skin restricts movement and can affect the shape of facial features. Babies suffering from the disorder often have breathing difficulties, problems regulating body temperature and fighting infections. The disorder affects about one in 500,000 people, according to the National Organization for Rare Disorders.
Warning: image showing the baby's disorder below may be jarring.
Doctors gave Jamison no life expectancy.
"I was severely depressed," said Barber, who lives in Chattaroy, Spokane County. "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 from August to December of last year. Barber said she went to counseling and made the decision to be "the mom Jamison needed me to be."
Barber, also mom to a 7-year-old son and stepmom to a 6-year-old son, is now a full-time caretaker for Jamison, who requires intense 24/7 care.
It's a role that requires constant cleaning. Jamison's skin can't shed harmful bacteria normally — even a small cut leaves him vulnerable to life-threatening infections. His sheets and everything he touches, including toys, must be disinfected daily, she said. It's also emotionally taxing.
Jamison's doctors recommended he bathe in bleach to ward off infections that could land him in the hospital. The baths are so painful, Barber gives Jamison morphine — which always worries her — because it slows his already labored breathing. Lately, she and Jamison's dad climb into the bleach tub with their son to comfort him. They have to scrub off his excess skin with an exfoliating mitt.
Jamison's dad Kolton Stam works in construction, and helps Barber care for Jamison as much as he can when he's off work.
Barber said support also comes from her faith.
"Some days I wake up and I think how am I going to get through another day," she said. "That small voice says Alicia we are going to do this...God is carrying me the most."
Her hopes for the future?
She wants Jamison "to laugh and run and play with other kids." She wants him to have "an amazing life."
Right now, Barber is raising money through a GoFundMe and hopes she'll be able to attend a conference in Nashville that could connect her with other parents of children with harlequin ichthyosis. She said it also could help her find a safer way to bathe Jamison using a nano bubbler that exfoliates skin using oxygen-filled bubbles.
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