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Alicia Barber is a 27-year-old mother of two from the United States. Barber’s story recently became viral, as the woman took to social media to raise awareness on Harlequin ichthyosis, a very rare and, in some cases, fatal condition that affects children. Due to his condition, Barber goes to great lengths to care for her one-year-old son.
Only 1 in 100 Patients Are Diagnosed with Harlequin Ichthyosis
Barber declared that her life took a totally different turn when baby Jamieson was born. During a recent press appearance, the 27-year-old mother told the reporter that her doctor told her about Jamieson’s condition when she was 7-months pregnant.
At that time, the doctor recommended an abortion, explained to Barber that children diagnosed with Harlequin ichthyosis have no more than two percent chances of surviving their first year of life.
However, the woman decided to keep the child, and, against all the odds, Jamieson lived. Still, Barber declared that life with baby Jamieson is no bed of roses.
Harlequin ichthyosis occurs once at 300,000 births. Patients with this condition have scaly skin, and sudden movements can make the skin crack, leaving them vulnerable to infections.
Medical researchers noted that patients are also prone to dehydration and have trouble maintain constant body temperature.
Barber said that as part of her weekly routine, she needs to bathe baby Jamieson in bleach.
More specifically, the woman washes his skin with a Clorox bleach solution and then, using a special mitt, she exfoliates the scaly patches of skin.
The woman said that this is a painstaking process and that she needs to give Jamieson morphine so that he can tolerate the pain.
Unfortunately, Barber had her fair share of criticism after posting a picture of Jamieson on Facebook. She said that most of the people accused her of leaving the baby too long in the sun.
Still, the woman adores her son and, quite recently, she took to social media and other online channels to raise awareness on harlequin ichthyosis.
Image source: Wikipedia