MUM'S HEARTACHE
I can’t hug my baby boy without tearing his skin and causing nasty, painful blisters
EVERY mum treasures those special moments when they can kiss and cuddle their little ones.
But for heartbroken Tiana Williams, hugging her little boy will always come with a huge risk.
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Little Jamison, who is just three-months-old, breaks out in nasty, painful blisters when his parents simply just touch him, hold him or change his nappy.
This is because he has a life-limiting disorder known as epidermolysis bullosa (EB), a group of rare genetic conditions that result in easy blistering of the skin.
And his mum Tiana, 26, from Alaska, USA, is now sharing his story in a bid to raise awareness for the devastating condition, that also tragically took the life of her six-month-old daughter Mia.
The stay-at-home mum said: "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."
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Before Jamison was born, Tiana had another child, Mia, who had EB.
Unfortunately, this meant that there was a 50 per cent chance that her unborn baby boy would also have the same condition.
At 16-weeks pregnant, Tiana's worst fears were confirmed - Jamison also had EB.
Tiana said: "Jamison was first diagnosed with the disease when I was around 16 weeks pregnant. We had amniotic testing done.
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"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."
I was heartbroken; knowing already what EB was and having to deal with it again just broke my heart
Tiana Williams
But that wasn't the only heartbreak Tiana would be forced to face - at just six months old, her little girl Mia passed away.
Still grieving the loss of Mia, Tiana and her husband Eddie Stanley Jr, 29, welcomed Jamison into the world in July 2019.
But ever since his birth, the couple have struggled to hold him, change his nappy or dress him due to the sensitivity of his skin which has 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.
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Tiana added: "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."
Tiana spends nearly 24 hours a day caring for her poorly son and making him as comfortable as possible.
However, she says it is agonising not being able to ease Jamison of his pain.
She said: "My day to day caring for Jamison involves blister puncturing, when they accrue.
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"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."
What is epidermolysis bullosa (EB)?
Epidermolysis bullosa (EB) is the name for a group of rare inherited skin disorders that cause the skin to become very fragile.
Any trauma or friction to the skin can cause painful blisters.
The main symptoms of all types of EB include:
- skin that blisters easily
- blisters inside the mouth
- blisters on the hands and soles of the feet
- scarred skin, sometimes with small white spots called milia
- thickened skin and nails
The 3 main types of EB are:
- epidermolysis bullosa simplex (EBS) – the most common type, which tends to be milder with a low risk of serious complications
- dystrophic epidermolysis bullosa (DEB) – which can range from mild to severe
- junctional epidermolysis bullosa (JEB) – the rarest and most severe type
The type reflects where on the body the blistering takes place and which layer of skin is affected.
There are also many variants of these 3 main types of EB, each with slightly different symptoms.
Source:
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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’.
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More on rare skin conditions
"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."
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