‘It’s the worst disease you’ve never heard’: Sydney family’s horror ‘butterfly baby’ diagnosis
A Sydney mum has opened up about her daughter’s daily battle with a rare disease which causes her skin to blister with just the slightest touch.
Four-year-old Lylah Scott was born a “butterfly baby”. Her skin was covered in blisters and sores as soon as she was placed in her mother’s arms.
Her tiny feet had deep wounds which stretched up to her ankles. Both her hands her were red and raw.
The newborn had to be rushed into specialist care within hours of her arrival as she was quickly diagnosed with a rare medical condition called Epidermolysis Bullosa.
“It’s the worst disease you’ve never heard,” her mother Lara Scott told
Lylah’s entire short life has been spent battling the hereditary disease.
“EB is likened to living with third degree burns,” Lara said.
“Lylah’s skin forms blisters and peels with the slightest touch, it causes her extreme pain everyday. Lylah under goes hours of care, including bleach, and salt baths and bandage changes everyday in order to protect and medicate her wounds.”
Daily life is a constant challenge for the family. Lylah has to wear her clothes inside out as the seams irritate her skin, causing it to blister and sometimes peel off.
Every morning when Lara is putting on her shoes, little Lylah will sit next to her and place her feet in her lap and asks for shoes.
Lara said it breaks her heart that she has to tell her she cannot wear shoes as it only causes more blisters.
Her hands and feet are the two areas the areas that are severely impacted by EB.
The blisters often leave her immobile for several days at a time as her feet are often covered in blisters making it too painful for her to walk.
Lylah also has to follow a strict diet as hard and crunchy textures cause blisters in her mouth, meaning she is limited to a mostly soft-food diet.
“We have to make modifications to everyday life. We had to line her pram and car seat with sheep’s wool and mink to protect her skin,” Lara said.
Lara knew there was a risk her child would have the rare condition as Lylah’s father, grandfather and uncle all live with it.
There are varying severities of the condition, from mild to severe cases, Lylah is closer to the severe end.
The four-year-old has a multidisciplinary team of doctors who help manage her condition, which is unfortunately something she will have to live with for the rest of her life.
Despite the grim diagnosis, Lylah remains “an amazing little girl, with an incredible personality”, her mum said.
“She is a very happy and bubbly girl and always making us laugh. Lylah loves anything to do with animals and dinosaurs! She loves to sing, dance, jump on her trampoline and spends a lot of time with her dogs and guinea pigs.”
Lara has shared Lylah’s story in the hope of raising awareness of the condition and of DEBRA Australia, which is a not-for-profit organisation.
DEBRA assist in improving the life of those living with EB by providing necessary support services, medical supplies, aids and equipment, support services, and research focusing on different aspects of EB.
WHAT IS EPIDERMOLYSIS BULLOSA?
Epidermolysis Bullosa affects around 1,000 people in Australia. The slightest touch causes someone with EB to blister.
Living with the condition has been likened to living with third degree burns.
The disease is not always evident at birth. Milder cases start showing when a child begins crawling or walking.
There is no cure for the disease, treatments focus on pain relief, stopping infections and reducing scarring