Baby Boy, 1, With Rare Skin Condition Has to Bathe in Bleach: 'It Is Something I Dread'
He has defied the odds for his condition.
A baby’s rare skin condition requires his mother to bathe him in bleach.
Jamison, 1, suffers from Harlequin ichthyosis, a genetic mutation that causes infants to form scaly skin separated by deep cracks. The condition makes it difficult to move around freely and causes them to have a high-risk for infection.
Jamison’s mom, 27-year-old Alicia Barber, washes him with Clorox bleach twice a week for 15 minutes before exfoliating with a mitt to rub away hard skin and ward off infection.
“It is something I dread because he is in pain," Barber said. "He does cry and I have cried quite a few times."
Doctors initially told Barber about her son’s condition when she was 7 months pregnant and encouraged her to terminate the pregnancy.
“I had never heard of Harlequin ichthyosis before the doctor took me aside and showed me a textbook with pictures of babies with this condition," Barber said. "They had no faces, no hands, no feet and no fingers and toes. It was really traumatizing."
Doctors gave Jamison at two percent chance of surviving, but he has defied the odds, making it to his first birthday.
It hasn’t been easy, however. Jamison has to have the grueling baths and takes a morphine prescription to ease the pain. She also said she struggled with comments from cruel strangers who called her son "creepy."
"Someone said we were bad parents letting him get so sunburned because his skin is quite red in appearance," Barber said.
Barber said Jamison's older sibling was afraid of him at first, but that quickly changed. The family is hoping to spread awareness about the condition. Only 1 in 100 people in the U.S. are currently living with it.
Barber and her family are currently raising money through GoFundMe to attend a medical conference specifically for the condition.
"It's so rare," Barber said. "I really want to do what I can to educate people and advocate for his condition."
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