Doctors said baby Jamison wouldn’t live.

Now aged one, this little boy is surviving against the odds.

Jamison was born in Washington, USA, with Harlequin ichthyosis, a rare genetic mutation that means his skin is covered in hard scales.

To survive, he needs a 45-minute bath in bleach twice a week and rough exfoliation to stave off infections.

The disease is extremely rare, occurring in every 500,000 births.

Mum Alicia Barber, 27, was deemed infertile in 2013 due to endometriosis, but she had surgery to remove excess scar tissue in August 2016.

In the October of that year, she fell pregnant with twins.

“I still remember crying hysterically, jumping up and down”, says Barber on her Go Fund Me Page.

But tragically, one foetus was absorbed at 11 weeks, and she was told at seven months the twin was unlikely to make it either.

Devastated, Barber and her own twin sister started to plan for her unborn son’s funeral.

But Jamison survived, after a traumatic birth that saw his mother experience four blood transfusions. Little Jamison was rushed straight to NICU.

Barber says, “he came out crying and I knew he was going to fight.”

When she was finally allowed to see her son, Barber admits she broke down in tears of joy, fear, hope and grief.

“That moment will always be in my heart”, she says.

Harlequin ichthyosis is a life-long, severe, genetic disorder. Because there is no cure, the goal of treatment is to relieve pain and discomfort.

Barber and her partner Kolton Stam, 26, care for Jaimson full time with help from the hospital.

But it’s not easy.

“It’s painful for him so he is on morphine, [and] he does accidently swallow the bleach when I am pouring it over his head and it occasionally gets in his eyes. He does cry and I have cried quite a few times”, says Barber.

The couple say strangers think he has sunburn, and they are often called “neglectful” in the street.

But they’re so proud of baby Jamieson’s progress, he continues to stump medical specialists.

Barber has set up a Go Fund Me Page to raise awareness for Harlequin ichthyosis.

She raised $13,000 to allow her family to travel to Nashville for a conference on the disease.

However, an update has today been posted on the page, it reads:

“We will not be going to the Medical Conference. I just got the news that Jamison’s heart is not strong enough to travel. Please keep him in your thoughts and prayers.”

No doubt that money will still go to a good cause; this debilitating disease.

Currently, funding raised sits at more than $33,000.

Money little Jamison will no doubt need as he continues to fight his way through life.