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Bleach Baths Save Boy With Rare Skin Disease Stay Alive

Newsweek logo Newsweek 6/22/2018 Nicole Rojas

A mother in Washington revealed she has to bathe her 1-year-old son in bleach due to a rare genetic skin disorder that leaves him covered in scabs and sores.

Jamison Stam, who was born in May 2017, has harlequin ichthyosis, a rare skin disease that leaves infant’s skin with thick diamon-shaped plates separated by fissures. According to the U.S. National Library of Medicine, the disease limits movement and can lead to breathing difficulties and respiratory failure.

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Doctors told Jamison’s mother Alicia Barber, 27, that her son had no life expectancy, USA Today reported. Barber, who is her son’s full-time caregiver, learned of his life-changing diagnosis when she was seven months pregnant. According to SWNS, doctors advised Barber terminate the pregnancy.

Despite Jamison’s two percent chance of survival, he made it to his first birthday. Due to her son’s condition, Barber has to bathe the 1-year-old in bleach twice a week for 15 minutes. She then has to exfoliate his skin with a mitt to remove hard skins and prevent infection.

Jamison also has to take two 45-minute daily baths that involve being rubbed with a sandpaper rag to shed his skin.

Barber told USA Today that Jamison’s sheets and everything he touches, must undergo daily disinfection. She said she’s forced to give her son morphine during the bleach baths because they are so painful for him.

“It is painful for him so he is on morphine, which is scary because he has respiratory issues and it can slow things down and make him sleepy,” Barber told SWNS. Barber and Jamison’s father have even taken to climbing into the bleach tub with Jamison to offer him comfort.

Jamison’s mother hopes to raise awareness about his rare condition. “I had never heard of Harlequin ichthyosis before the doctor took me aside and showed me a text book with pictures of babies with this condition,” Barber said. “They had no faces, no hands, no feet and no fingers and toes.”

She added that she and her partner have received hurtful comments about Jamison’s appearance and their parenting. “It’s so rare. Jamison is about 1 in 100 people in U.S. living with this,” she said. “I really want to do what I can to educate people and advocate for his condition.”

The family is raising money through a GoFundMe page in hopes that Barber will be able to attend a conference in Nashville to meet other parents of children with the disease. In an update posted Thursday, Barber said that the funds would help pay for a portable nano bubbler, which exfoliates skin using oxygen-filled bubbles.

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