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Rare disease means baby must wash with bleach and be rubbed with a 'sandpaper rag'

A mom has to give her baby Jamison baths in bleach solutions and rub off skin the child was born with Harlequin ichthyosis, a lifelong, terminal genetic disorder that causes plated, cracked skin and other abnormalities.
A mom has to give her baby Jamison baths in bleach solutions and rub off skin the child was born with Harlequin ichthyosis, a lifelong, terminal genetic disorder that causes plated, cracked skin and other abnormalities. GoFundMe Screenshot

When Alicia Barber gave birth to her son Jamison near Spokane, Wash., in 2017, she said doctors expected the baby to be stillborn. But when he "came out crying," the mom knew she had fighter on her hands, she recalled in a post on GoFundMe.

But it's been quite a fight.

Jamison was born with the rare genetic disorder harlequin ichthyosis, which causes babies to be born with thick, scaly, cracked plates of excess skin which can distort the shape of the mouth, nose and eyes, according to the National Institutes of Health.

The disorder causes other problems that can make the infant's first few months extremely dangerous. The skin can make breathing difficult and can become easily infected. Severe, dangerous dehydration can set in. There is no cure, and the oldest living person with the disorder was 34-years-old in 2018.

"I broke down when I saw him- tears of joy, fear, hope, grief, that moment will always be in my heart. He was so tiny ... My heart broke into a million pieces over and over. I wanted to hold him and tell him it’s going to be ok," Barber wrote on her GoFundMe.

Jamison kept fighting, and was eventually able to be released from the hospital. But he was separated from his mom for awhile.

"I was severely depressed," Barber told USA Today. "I didn’t go to see him. The state felt like I couldn’t provide proper care for him at that time."

After a few months in foster care, Jamison was reunited with his mom after she went to counseling and resolved to be "the mom Jamison needed me to be," according to USA Today. Now she handles the job of full-time caregiver alongside Jamison's father Kolton Stam and her two other children.

"The parents have to do very meticulous skincare, pretty much around the clock, every hour to two hours," Jamison's doctor told KXLY.

Part of that care includes bathing the 1-year-old in a bleach solution that can help ward off infections, Barber told Fox News.

“He does accidentally swallow the bleach when I’m pouring it over his head and it occasionally gets in his eyes. It is something I dread because he is in pain. He does cry and I have cried quite a few times," Barber told the news site. “If he didn’t have these baths he could end up in the hospital with an infection. We have to keep a very, very tidy, clean home at all times and check him every couple of hours for any sign of skin infection.”

She must also scrub off his excess skin with an exfoliating sandpaper rag, the mom told Fox News.

"Some days I wake up and I think how am I going to get through another day," Baerber told USA Today. "That small voice says Alicia we are going to do this. ... God is carrying me the most."

After posting about her son's journey to GoFundMe, Barber has raised enough money to purchase tickets to a Harlequin ichthyosis conference in Nashville and will be able to purchase advanced equipment that may allow them to stop the bleach baths, she wrote on the GoFundMe page.

"Jamison is the strongest, bravest, little boy I have ever met. He overcame many challenges, and continues to do so. God had his angels surrounding him from day one," Barber wrote.

In January, Lia Florio of Boalsburg, Pennsylvania was diagnosed with a rare genetic disorder called beta-propeller protein-associated neurodegeneration (BPAN). After the diagnosis, the Make-A-Wish Foundation came and built a play set in the Florio



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