By Josh Saunders
A little girl whose skin tears off with the lightest touch has been lovingly nicknamed the ‘real life mummy’ because of the bandages that keep her alive.
Lily Mackey from Marietta in Ohio, USA, has a severe condition where any friction causes her skin to peel-off, blister and leave open wounds.
The three year old was diagnosed with recessive dystrophic epidermolysis bullosa (RDEB) at two days old after doctors noticed blistering in her mouth.
Mum Faith, 26, was initially so scared of hurting her daughter’s delicate skin that she refused to cuddle her and would only pick her up with pillow cases.
To help her wounds heal and prevent deadly infection, little Lily is wrapped neck to toe in bandages, leading Faith to nickname her daughter the ‘mummy’.
Faith, a restaurant worker and carer, said: “Any friction or pressure can make her skin tear or blister inside and out of her body, so she has to be careful and wrapped up all the time.
“Everything apart from her head and hands are covered in bandages to help prevent her skin from infection and protect her if she falls.
“We tell her that we are going to ‘wrap you up like a mummy’, to make her sit still and listen when she needs to lift her arms or legs.
“We started calling her a ‘mummy’ because she has to be wrapped so many times over, which can takes two hours to do.
“Without the bandages when someone accidentally stepped on her, it caused blisters, tears and pulled the skin off her feet and toes, it’s not very nice so it’s important to cover her up.
“It was hard to get used to, when she first came home, I wouldn’t cuddle her or touch her skin because I didn’t know how much her body could take.
“We used to pick her up with a pillow case and blanket so that we didn’t tear her skin, we were scared to touch her but over time have gotten used to her pressure points.
“It was hard learning how to handle her at first, if I bumped her she would scream and thrash around, her skin would become really painful.”
Strangers often mistake Lily for a burns victim, but her parents say it gives them a chance to educate others about her rare condition.
Faith added: “A lot of people have never heard of her condition and so when they see a kid all wrapped up in bandages they naturally assumed she’s been burned.
“They think she is adorable but ask if she was burned in a fire or if she fell over, because of all the open wounds and huge blisters that are on her face and then from her neck down, so we have to explain her condition a lot.”
Epidermolysis bullosa affects one in 20,000 children in the USA and Lily has one of the most severe forms of the condition – recessive dystrophic.
Sufferers are often referred to as ‘butterfly children’ due to the skin on their body being as delicate as the wing of a butterfly.
To accommodate for their daughter’s fragile skin, parents Faith and Nick, 34, ‘Lily proof’ their home, covering all carpets and flooring with memory foam to insulate her falls.
Along with daily dressing changes that take up to two-hours, covering her skin in lotion and giving her baths with special soaps, oatmeal and salts.
Faith said: “Wrapping her up with dressings is pretty time consuming but it’s vital to catch what’s draining from the wounds and prevent getting infections.
“As she gets older it will only get harder because the surface area she can get hurt on will be larger and more severely, meaning she’ll be battling bacteria all the more.”
To prevent malnutrition and to counteract the damage her body goes through each day, Lily needs up to 2,500 calories a day.
Faith said: “All the calories from her food and nutrition she gets goes towards healing, so we have to make sure she gets extra nourishment or she could die.
“We understand that she isn’t going to get better yet but we are hopeful for a cure and try to focus on everything she can do rather than what she can’t.”
But there is hope for Lily, new treatment hopes to help sufferers create collagen, something epidermolysis bullosa patients lack, causing their skin to tear, blister and shed.
The medical developments combine stem cell treatment with chemo and radiotherapy, but puts sufferers at risk by temporarily eradication their immune system.
Faith said: “It’s a really big decision, we don’t want to sit around waiting for her skin to get worse but it’s very risky too.
“Because her immune system would be knocked out, it makes her even more vulnerable to infection and could kill her.
“It’s a really big decision and involves a lot of chance.”
Until then, the Mackey family are fundraising to cover daily provisions that will keep Lily alive as well as the cost of travelling to see specialists to improve her life quality.
Faith said: “Our insurance covers a lot of her supplies but we struggle because she always needs someone to monitor her so only have one income.
“She needs special diapers, special clothing, lotions and remedies, which there is no help for.
“We’re also driving three and a half hours to hospitals to see specialists and hospitals that understand her condition so it’s a financial battle.”
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