Toddler Is Wrapped In Bandages In Order To Survive As The Slightest Touch Could Kill Her

• Lily Mackey's, from Ohio, skin blisters that could lead to deadly infections
• She suffers from recessive dystrophic epidermolysis bullosa, or 'butterfly skin'
• Lily's parents were initially scared to cuddle her and touched her with pillows
• She is now receiving treatment that dampens her immunity and could kill her
• Untreated, Lily's condition will only get worse and more painful as she ages

A little girl whose skin tears off with the lightest touch has been nicknamed the 'real life mummy' as she has to be wrapped bandages to keep her alive.

Lily Mackey from Marietta in Ohio, has a severe condition where any friction causes her skin to peel-off and blister, leaving her with open wounds that could cause deadly infections.

The three-year-old was diagnosed with recessive dystrophic epidermolysis bullosa (RDEB), also known as 'butterfly skin', at two days old after doctors noticed blistering in her mouth.

She is now receiving a new treatment that dampens her immune system and leaves her more vulnerable to infections.

Lily's mother Faith, 26, said: '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.'

Despite Lily's struggles, there is hope as a new treatment aims to help RDEB sufferers create collagen, something they lack.

The medical developments combine stem cell treatment with chemo- and radiotherapy, however, it does temporarily dampen a patient's immune system.

Faith, a restaurant worker and carer, 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.'

Faith 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, Lily is wrapped neck-to-toe in bandages, leading Faith to nickname her daughter the 'mummy'.

Faith said: '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.

'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.

She said: '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.

'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.

Faith said: '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 accommodate their daughter's fragile skin, parents Faith and Nick, 34, have 'Lily proofed' their home by covering all carpets and flooring with memory foam.

Lily also requires daily dressing changes that take up to two hours to apply, as well as having her skin covered in lotion and baths with special soaps, oatmeal and salts.

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.'

Lily's family are fundraising to cover daily provisions that will keep her alive, as well as covering the cost of travelling to see specialists.

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.'



Source