'Seek Jesus': Mother of Baby With Extremely Rare Skin Disease Shares Secret of Strength

A mother from Washington State is clinging to God as she continues to watch her son cling to his life every day for the last year.

 

Alicia Barber defied doctor's predictions when she gave birth to Jamison Stam in May 2017. Now, a year later, she and her family continue to beat the odds – but she says it hasn't been easy and it wouldn't be possible without God.

 

After struggling with infertility for four years, Barber found out she was pregnant and expecting twins in October 2016. But her world was turned upside down not longer after.

 

"I knew something wasn't right," Barber told CBN News. "I had a gut feeling something was wrong the whole pregnancy. Intuition is a real thing."

 

Her fears became real when at 11 weeks pregnant, Twin B absorbed itself, known as vanishing twin syndrome. According to the American Pregnancy Association, the condition occurs in 21 to 30 percent of multi-fetal pregnancies. 

 

Things got increasingly worse as her pregnancy became high risk, and doctors told her at seven months pregnant that the son she carried would likely not survive.

 

Doctors diagnosed Jamison with a rare genetic disorder called Harlequin ichthyosis, which covers the skin with hard, thick diamond-shaped plates separated by deep cracks.

 

According to the National Organization for Rare Disorders, the disorder affects about one in 500,000 people. Babies suffering from the disorder often have breathing difficulties, problems regulating body temperature and fighting infections.

 

"They told me he would most likely be stillborn and if he did come out that he had only a two percent chance of survival," Barber said.

 

Doctors then told her she had two weeks to decide whether or not she wanted to terminate the pregnancy.

 

"Family, friends, everyone was telling us to abort him, but I never wanted that," Barber said.

 

She continued, "I wanted a baby and I struggled with trying to get pregnant for years and it didn't matter if he had a disability or something wrong with him. God does things for a reason and his timing is everything."

 

Jamison finally entered the world in May 2017. Shortly after he was born, Barber says she fell into a deep depression and the state deemed her unfit to care for Jamison.

 

"I was severely depressed and I was coping with alcohol during that time, so he stayed with my fiance's parents," Barber told CBN News.

 

"It was really, really hard because it was a very limited time that I was able to see him and spend time with him. I wasn't allowed to be a mom."

 

Barber said though she grew up Christian, she had a tendency to turn away from God and fall into unhealthy habits and relationships.

 

"Like a log drifting at sea," Barber said. "I didn't start clinging to God until I had Jamison. Now I'm no longer drifting, I know I can't do this without Him."

 

She later continued, "I went through a period of time where I thought I could do it all by myself and it defeated me."

 

Barber said it was when she surrendered to God that she saw Him move in amazing ways.

 

Jamison continues to stump and surprise his doctors.

 

Barber said, "His physical therapists have told us that he wouldn't be very flexible because of the skin tightness. They said he wouldn't attempt to sit up, or things like that. But he does, he's doing all of it."

 

She continued, "That little boy's demeanor about life is so beautiful, he's always happy when he's not in pain or discomfort. Smiling, giggling, so full of energy and full of life despite all the challenges. It's just amazing to watch."

 

Jamison, now one year old, still requires around the clock care. His treatments include bathing him in bleach twice a week to help him fight infection and prolong his life. A piece of the story that has since garnered national attention.

 

Fox News, USA Today, People Magazine and the New York Post are among some major news outlets that have picked up Jamison's story.

 

But Barber says they're focusing on the wrong thing.

 

"I never wanted to raise awareness about bleach baths," Barber said. "I wanted to raise awareness about my son's condition, growing faith through that, and how we are where we are today because of God."

 

Jamison's condition is so rare, he is only one out of 100 people currently living in the US with Harlequin Ichthyosis.

 

Barber says it's scary and traumatizing, but she is given endurance every day by God.

 

"It's nights like last night, Jamison had a rough night, it was hard," Barber said. "But I wake up in the morning and when I hear his baby monitor go off and I hear him crying, I just thank God that he woke up alive."

 

She continued, "I just ask God for strength to get me through. It's hard but the reward of Jamison being here at all is so beautiful."

Barber had been hoping to meet families like theirs at the Foundation of Ichthyosis and Related Skin Types annual conference in Nashville this weekend. 

 

The conference provides lectures by leading physicians about ichthyosis and gives children suffering from the condition a chance to meet with specialists. It is also a chance for people affected by ichthyosis to meet others who share similar life experiences and related issues.

 

Barber started a GoFundMe account to raise money for travel expenses to get them there, but Jamison's doctors have deemed him not strong enough to travel.

 

Barber still used the funds to pay for Jamison's clinical visit at the conference, which now will happen via Skype. The rest of the funds raised are now going toward everyday medical expenses towards Jamison's care.

 

Barber says she's so grateful for the support and encourages any mother or family that is going through something similar to "seek Jesus."

 

"You cannot survive without Him," Barber said. "Without Him through this....I know Jamison wouldn't be home if I wasn't really relying on Him during the times that were the absolute hardest. He's taught me an abundance of love and patience and kindness that grows more every day. He's taught me to never take anything for granted."