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One-year-old Jamison Stam was not expected to make it to his first birthday. In fact, according to his mother Alicia Barber's GoFundMe page, his doctors expected him to be stillborn.
Jamison's twin was reabsorbed during pregnancy and his mother needed to be rushed back into surgery post-birth, receiving multiple blood transfusions before being put in the ICU.
She would not even meet her baby face-to-face for two more days.
Born 6 weeks early and weighing in at only 4 pounds 2 oz, little Jamison survived, clinging to life despite what will be a lifelong incurable condition. His mother says she knew he was a fighter from the moment she first heard him cry.
He came out crying and I knew he was going to fight.
Born with a severe form of harlequin ichthyosis, Jamison suffers from a rare and devastatingly painful genetic condition. According to the U.S. National Library of Medicine, Harlequin Syndrome is characterized by hard, thick diamond-shaped plates separated by deep cracks, much like the diamond-shaped designs on the costume of the Harlequin character in the Italian Commedia dell'arte after which it is named.
These patches of taut skin gradually split and peel off.
WARNING: image showing the baby's disorder below may be jarring.
According to a story in USA Today:
The skin restricts movement and can affect the shape of facial features. Babies suffering from the disorder often have breathing difficulties, problems regulating body temperature and fighting infections.
The disorder affects about one in 500,000 people, according to the National Organization for Rare Disorders.
It's a condition that as Jamison's mother states, requires round-the-clock care that includes having to bathe her baby in bleach in order to keep him safe from infection:
...skin care-every 2 hours he has aquaphor applied head to toe and his entire body is examined for any sign of a skin infection, every 2 hours his temp is checked (due to overheating), 2 -1 1/2 hour baths daily, 2 -hour long bleach baths weekly, eye care, respitarory care 5x/day, physical therapy 3 hours/day, occupational therapy, speech therapy, the list goes on.
Barber, who is also mom and stepmom respectively to 7-year-old and 6-year-old sons, is Jamison's full-time caretaker. It's an intense responsibility, one that requires 24/7 attention.
Jamison's skin cannot shed dead skin cells or harmful bacteria normally, leaving him extremely vulnerable to life-threatening infections.
Which is why Jamison's toys, sheets and anything else his skin comes in contact with must be disinfected daily. Jamison's father, Kolton, works in construction and helps with his care whenever he can.
USA Today explained:
Jamison's doctors recommended he bathe in bleach to ward off infections that could land him in the hospital. The baths are so painful, Barber gives Jamison morphine — which always worries her — because it slows his already labored breathing.
Lately, she and Jamison's dad climb into the bleach tub with their son to comfort him. They have to scrub off his excess skin with an exfoliating mitt.
But you can help:
Barber, whose family is self-described as low income, started her GoFundMe page as a way to raise money to help her find out the very best ways to care for Jamison. According to USA Today, Barber is holding out hope to raise enough money that she may also be able to find a safer way to bathe Jamison.
A device called a nano bubbler may be able to exfoliate Jamison's skin using oxygen-filled bubbles instead of having to rely on the bleach baths.
From her page:
Which leads me to the reason behind this page, every year there is a national conference for those affected with Ichthyosis. A time for creating life-long relationships, support, education, and hope.
This year the conference is in Nashville. We cannot afford the total cost to go, it would be a life changing event for Jamison, myself, and Kolton to attend.
I hope to have this experience to gain more insight on how to care for Jamison and meet his needs better, build new relationships with families who understand, and bring back what is learned to his specialists/providers so we can give Jamison the best life he deserves in working together for him.
Please, help us get to Nashville. <3
If you'd like to donate to help Jamison and his family, you can visit their GoFundMe page.
If you'd like to learn more about harlequin ichthyosis, you can visit the Foundation for Ichthyosis and Related Skin Types (FIRST)