Alicia Barber has to bathe her 1-year-old son Jamison Stam in bleach twice a week to keep him alive in Chattaroy, Washington.
The boy has harlequin ichthyosi, a rare genetic skin disorder, notes USA TIDAY.
Babies with harlequin ichthyosis often have difficulty breathing, regulating body temperature and fighting infections.
Jamison’s skin doesn’t shed harmful bacteria normally, and a small cut could make him vulnerable to life-threatening infections.
So Jamison’s doctors recommended he bathe in bleach to prevent infections. The bleach baths are so intense, the toddler has to take morphone to deal with the pain.
Jamison’s excess skin has to be scrubbed off with an exfoliating mitt.
Barber recalled learning of her Jamison’s condition:
I was severely depressed. I didn’t go to see him. The state felt like I couldn’t provide proper care for him at that time.
Some days I wake up and I think how am I going to get through another day. That small voice says Alicia we are going to do this…God is carrying me the most.
Barber is raising money through a GoFundMe page to attend a conference to connect with other parents of children with harlequin ichthyosis.
(Source: USA TODAY)
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