WARNING – CONFRONTING IMAGES: A mother whose young boy suffers from a rare skin condition has been left with no option but to wash her child in bleach in a bid to fight off infection.
Alicia Barber, from Washington, US, gave birth to one-year-old Jamison Stam in January 2017 after a lengthy battle with endometriosis which resulted in her left ovary being removed.
Jamison was born with Harlequin Ichthyosis – a rare condition where the skin doesn’t form properly because of a genetic mutation, Dr Deshan Sebaratnam, Paediatric Dermatology Fellow at Sydney Children’s Hospitals Network said.
Dr Sebaratnam told Yahoo7 News babies are born with thick plates of scale that encase the body like a coat of armour. It affects about one in 500,000 people.
Graphic images show Jamison moments after he was delivered, with sores covering his skin and blisters over his eyes. Doctors predicted he wouldn’t survive.
Children born with the condition require intensive care and medical support because they are at risk of fluid and salt imbalance, infection, breathing difficulty and can’t control their temperature properly.
With this in mind, the state deemed Ms Barber unable to care for Jamison and he was placed in foster care.
“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,” Ms Barber told USA Today.
But after four months of separation from her son, she was able to take him back after becoming “the mum Jamison needed” her to be.
She now cares full-time for her son, which involves a rigorous routine including bathing him in bleach as his skin is unable to shed harmful bacteria. The bi-weekly baths are so painful, Jamison is given morphine to combat the pain.
She also has to disinfect everything he touches daily, leaving Ms Barber pushed to her limits.
“Some days I wake up and I think how am I going to get through another day,” she said.
While Ms Barber cares for her son 24/7, Jamison’s father, Kolton, works in construction, earning a modest wage.
With a lack of funds, Ms barber has started a GoFundMe page to allow her visit a Harlequin Ichthyosis convention to learn more about the condition and meet other parents whose children are also affected.
Jamison will require lifelong medical support from dermatologists, paediatricians and ophthalmologists and continues to defy the odds.
Jamison’s skin has visibly improved but continuously suffers day to day. His family has tried their best to integrate him into everyday life and wish for him “to laugh and run and play with other kids.”