Life Offbeat

By Josh Saunders

A baby with SCALY SKIN condition has defied doctors who gave her one year to live and said she would never walk or talk.

Adorable Paige Milby, from Greensburg in Kentucky, USA, was born with lamellar ichthyosis – a genetic disorder that causes her extremely dry skin to crack and shed.

At two-months-old, doctors gave her the deadly prognosis and believed that the tightness of her skin meant she would be confined to a wheelchair and never communicate.

But mum Tamara, 21, refused to give up and thanks to a daily routine of two baths, moisturising her full body in lotion and other medications she’s defied doctors.

Miracle Paige who is now 14-months-old can run around and spoke her first word ‘Dadda’ months ago.

PICS BY TAMARA MILBY / CATERS NEWS

Tamara, who works at gas station, said: “When we were told that due to her skin, she wouldn’t make it over a year we were devastated.

“Doctors said she wouldn’t be able to walk or talk either because the skin was too tight on her body.

“But I knew I couldn’t give up on my daughter and I would fight to do whatever I could possible to make sure she had a happy life for however long it was.

“Since then I’ve been giving her two baths a day, covering her skin in lotion and administering her eye drops and somehow she’s defied the doctors.

PICS BY TAMARA MILBY / CATERS NEWS

“Without the bathing and moisturising I know she wouldn’t be able to talk, use her hands, legs or arms as the skin would be too tight.

“I personally believe that if we didn’t do all of this she wouldn’t be here right now, it’s saving her life every day and gives her the ability to walk, talk and play with her toys.

“Up until her birthday I was really worried about whether she would make it and if doctors were right about her being unlikely reach a year old.

“On her birthday, my mum was crying and I was so shocked I had to sit down – realising how far she’d come along is mind blowing, she’s survived everything thrown at her.

“Our dermatologist was really surprised, he didn’t think she would live to be over one-year-old, let alone see her holding her cup with her fingers, working with her hands, arms and legs.”

PICS BY TAMARA MILBY / CATERS NEWS

Parents Tamara and Theodore, 23, were unaware their daughter would be born with ichthyosis until after doctors recognised the ‘white mass’ on her skin – a symptom of the condition called collodion membrane.

After nearly two weeks in intensive care, the little girl underwent her first or four surgeries to construct eyelids, because the skin around her eyes was so constricted.

Tamara said: “The skin was so tight that she was born without eyelids, she couldn’t blink or shut her eyes, they were always wide open.

“At 12 days’ old she had her first surgery, where they sewed her eyes shut for three weeks, then after the skin had stretched they removed the stitches and her eyelids were formed.

“Earlier this month our eye doctor told us her eyes are perfect, there’s no scaring, or anything covering her tear ducts.”

For the first nine months, Tamara says she was afraid to take her daughter outside for fear of the nasty comments people could make.

Tamara added: “Once when we were out shopping, a lady thought she was burned all over her skin and worse, accused us of burning her.

“There’s nothing wrong with her in my eyes, she’s the perfect angel and I wouldn’t trade for her for anything in the world.

PICS BY TAMARA MILBY / CATERS NEWS

“She may have skin and eye problems, but she’s my daughter and I love her – I tell her that every day.”

Tamara says that often people with the condition are referred to as ‘fish’ because of the ‘scaling over their skin’.

Due to the dryness of Paige’s skin she sheds frequently and as a child had to undergo two operations to remove dead cells from her ear.

She added: “Because of her condition, she’s like a little fish out of water and is scaly all over.

“The skin builds up on her face, where it shed it leaves little brown chunks of skin.

“How much skin pushes off all over her body and head is horrible.

“After having Paige at my mom’s, she often says by the night time she can fill a whole dustpan full of dead skin, from where she’s shed.”

Tamara is now fundraising for a specialist bathing aid that will help to remove dry, cracked skin that she believes would radically improve Paige’s quality of life.

PICS BY TAMARA MILBY / CATERS NEWS – Baby Paige had to have her eyelids sowed together so that the tight skin around her eyes would stretch and form eyelids of a normal length – previously she couldnt close her lids at all – in December 2015.

She added: “It’s a machine that shoots out microbubbles, putting oxygen into the dead skin cells that allows it to come off her body easier and leaving her with smooth skin.

“After using the jet-blower device it would give her smooth skin for 16-20 hours and meaning she would not have any skin problems throughout the whole day.

“As she gets older, I want her be like everyone else and make sure there’s a smaller chance of her being made fun of because of her skin.”

To donate visit here.

Jean Pickford, CEO of The Foundation for Ichthyosis & Related Skin Types, said: “FIRST is the world’s leading patient advocacy organization dedicated to improving lives and seeking cures for those affected by the rare condition of ichthyosis and related skin types.

“FIRST educates, inspires and connects affected individuals, their families and medical professionals working in the field of ichthyosis.”

For more information or to donate to their cause visit here.