A devoted mum has told of her baby’s rare skin condition in a bid to provide a safe space for other families who are going through a similar ordeal.
Tiana Williams, 26, from Alaska, US, learned that her baby son had epidermolysis bullosa (EB) when she was 16 weeks pregnant.
EB is a group of rare genetic conditions that result in easy blistering of the skin – meaning that any trauma or friction to the skin can cause blistering or shifting, causing extreme pain.
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.
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.
Tiana said: “Jamison was first diagnosed with the disease when I was around 16 weeks pregnant. We had amniotic testing done.
“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.
“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.”
The parents just put him in an oversized t-shit or onesie if they have to take him out.
Their daily routine involves blister puncturing when they accrue.
“I administer strong medication daily to help with pain and keep him as comfortable as possible,” she added.
“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.”
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.”