How 'butterfly princess' Alexis keeps smiling through pain caused by rare genetic disease

People with Epidermolysis Bullosa have skin that can blister or peel at the slightest touch.
People with Epidermolysis Bullosa have skin that can blister or peel at the slightest touch.  Photo: Facebook/Alexisebbaby

Little Alexis is like any other two and-a-half year old – singing, laughing and making her feelings known …on her good days.

On her bad days, she is left in debilitating pain and, despite being a little girl full of energy, she is unable to move around freely.

Alexis was born with the rare genetic disease Epidermolysis Bullosa, where even a slight touch can make her skin blister and peel. Children with EB are often called 'butterfly kids' due to the skin being as fragile as butterfly wings.

EB support organisation DEBRA Australia estimates there are 1,000 Australians with EB and 500,000 globally.

Alexis needs to be bandaged daily to protect her wounds, which for some sufferers have been likened to third degree burns. Blisters can also occur spontaneously and can form in the oesophagus and mouth, making even eating painful.

Things most parents take for granted like toys, clothes, spoons, car seats and prams could all cause her damage.

Mum Alarna Gordon said the little girl was extremely resilient and remained upbeat, despite her challenges.

Not a good start to EB wareness week 😭😭😭 #FightEB

Posted by Alexis Butterfly Princess on  Monday, October 26, 2020

"She's so energetic, always laughing and carrying on, it's fantastic because a lot of kids with EB just don't have that energy or enthusiasm because of the pain and having to have the dressings," she said.

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"The hardest part is the affect it has on her walking and her mobility, her independence is taken away from her for periods when she is in pain. It's quite hard for us. She can't get up and walk around and play with the toys she wants, or to give someone a cuddle."

Ms Gordon said it's also hard that Alexis is too young to understand what is happening or why.

Both Ms Gordon and her husband were unaware they were carriers of the EB. It wasn't until Alexis was born with blisters in her mouth, patches of skin missing and de-gloved feet that they first heard of EB.

After initially being told Alexis would be bedridden, a team of specialists at the Sydney Children's Hospital provided fresh hope and taught the couple how to care for their daughter. Describing her first few weeks in hospital as "a blessing and torture all in one", they watched their newborn fight through multiple infections.

When they were able to take her home, they had the help of a home nurse to help them transition to come care. They are also assisted by DEBRA Australia, who ease the burden of the cost of daily medication, dressings and bottle teats for feeding and offer emotional support.

Now adjusting to life with the condition, Ms Gordon said Alexis continues to amaze them.

"She is very resilient. She takes it on so well. She goes through life daily with a smile on her face. She still goes to daycare and has friends and plays and carries on like a normal child. She is so resilient on those days she has pain."

October 25-31 is EB Awareness Week and DEBRA Australia will raise awareness and funds to help support families access specialised care, encourage research and improve the quality of life for sufferers.

Ms Gordon hopes people will come to understand more about the condition and that it goes beyond blisters.

"People talk about their skin being fragile, but that's different to the ins and outs of what EB does to a person.  They lose more than just the skin on their body. They lose mobility, and sight at times because it can affects their eyes when you have to dress their eyes. People who have fingers web together can't write or use full motion of their hands. It's so much more than just fragile skin."