By Liana Jacob
MEET THE BABY with an INCURABLE skin condition that with just a TOUCH results in BLISTERS – making it difficult for his parents to even HOLD HIM.
Stay at home mum of two, Tiana Williams (26) from Alaska, USA, was 16-weeks pregnant with her son, Jamison (three months), when her fears were confirmed that he had epidermolysis bullosa (EB), a group of rare genetic conditions that result in easy blistering of the skin.
Tiana had another child, Mia, who had EB and this meant that there was a 50 per cent chance Jamison would have the same condition. Mia passed away when she was six months old.
Since Jamison was born in July 2019, Tiana and her husband, Eddie Stanley Jr (29), have struggled to hold him, change his nappy or dress him due to the sensitivity of his skin which left them feeling devastated. They are so cautious of holding him that they leave him naked in a soft blanket unless they are taking him out of the house.
They now want to raise awareness of this incurable skin condition to provide a safe space for other families who are going through a similar ordeal and they want them to follow Jamison’s journey.
“Jamison was first diagnosed with the disease when I was around 16 weeks pregnant. We had amniotic testing done,” Tiana said.
“We decided to get tested because my first child Mia was born with epidermolysis bullosa and we had a fifty-fifty chance our next child would be born with it too.
“Epidermolysis bullosa is a rare genetic connective tissue disorder. With any trauma or friction to the can cause blistering or shifting of the skin, making it extremely painful.
“I was heartbroken; knowing already what EB was and having to deal with it again just broke my heart.
“It’s hard to see your child in pain and can’t take it away. Watching them hurt every day from just cuddling them or changing their diaper.
“He’s always in a soft blanket but is held with caution. Because just slipping can cause a blister or the skin to shift.
“Changing his diapers hurt him and we mainly just keep him naked in his blanket unless we are taking him out somewhere, we’ll put an oversized t-shirt or onesie on him without any trousers.
“My day to day caring for Jamison involves blister puncturing, when they accrue. I administer strong medication daily to help with pain and keep him as comfortable as possible.
“Eddie and I also have to change bandages; this step often takes hours. We apply each bandage slowly and carefully, one by one to protect damaged skin and reduce the chance of infection to Jamison’s oozing, open wounds.
“This is extremely painful for Jamison despite strong pain medication. But has to be done. The toughest part is having to watch him be in pain and not being able to really help him.”
Tiana says that she often gets comments from strangers reassuring her that there is a way to cure the condition, but she insists that this is not the case.
“Just trying to comfort him but knowing he still hurts is so hard to watch. Also doing his dressing changes after his bath is really tough,” she said.
“I try to stay positive through everything though because if I’m not staying positive, I might cause more damage.
“A comment I’ve received after explaining what EB was and saying it’s incurable, is, ‘oh my child has that, but I did this, and it went away’.
“No, your child didn’t have the same thing then because like I said, this is incurable, it can’t just go away. It makes me feel annoyed big time, because they obviously weren’t listening to me.
“Sometimes I do have concerns for his future like how he’d handle the comments people make or the stares from strangers.
“The only thing you can do to help is to keep him as comfortable as possible for the time he has with us and to stay as strong and positive as you can.”