SHE LIVES IN AGONY
Adorable little girl, 6, sheds her skin EVERY day and looks permanently sunburnt
Hanna Barrott has a rare condition that makes her skin grow faster than normal
THIS ADORABLE six-year-old sheds her skin every day and looks permanently sunburnt due to a rare condition that makes it grow faster than normal.
Little Hanna Barrott's parents apply lotion to her dry skin twice a day to stop it cracking, bleeding and potentially getting a fatal infection.
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And because her sweat glands are completely blocked, it can cause her to overheat and faint, so she has to be constantly monitored by mum Megan, 26, and dad Tyson, 30.
The youngster, from Tennessee, US, is one of 600,000 people in the world with lamellar ichthyosis – a genetic skin disorder that makes the skin cells rapidly generate and shed.
She was diagnosed with the condition after being born with a thick white layer of skin called "collodion membrane".
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Megan, a brand rep, said: "Hanna's condition means her skin grows a lot quicker than other children and she struggles in the heat because she can't sweat.
"We have to moisturise her skin twice a day and exfoliate because of all the dead cells that fall off all over her body.
"If she doesn't have lotion her skin will dry out, crack, bleed and then those areas can get dangerous infections too.
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"If we don't keep her body protected it can be life-threatening for her because the skin is the largest organ of the body.
"We have had to make a lot of adaptations to help her - from getting 100 percent cotton clothing as a baby, to homemade baby wipes and vacuuming daily because of the amount of skin that she sheds.
"But the biggest struggle for her is overheating, we have to monitor her whenever she is outside and be prepared.
"I have to monitor because if she overheats she can become severely dehydrated, faint, or have heat stroke.
"We have encountered obstacles, once a kid tried to spit and kick her and sometimes she's not included in things because she looks different.
"I've had people say, 'Someone's been out in the sun too long' but I quickly let them know she has a genetic disorder that makes her skin grow faster than ours.
"It's our job to raise awareness and educate people, I give her the choice whether she explains or I do."
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After Hanna was born, she was monitored closely and required breathing assistance because dead skin was blocking her airways.
Megan said: "She had splits across her skin, her lips looked blood red, her skin was so tight from the collodion membrane that her chest couldn't expand for her to breathe.
"It was hard for her to breathe through her nose, nurses had to keep her alive for five hours by regularly pushing a button for oxygen."
After coming home ten days later, the Barrott family learned to adapt around Hanna's condition, from her cleaning and moisturising routines to materials that help aid her skin.
They maintain the biggest challenge their daughter faces is trying to avoid overheating due to her sweat glands being blocked by extra skin.
Not being able to perspire causes her skin to dry out even more and other problems.
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Megan said: "Just twenty minutes of regular child play in weather above 23C (75F) can cause her to overheat.
"If it happens, she becomes sluggish, it completely depletes her energy and she can collapse.
"Also, if she has a fever she needs medicine around the clock, because she cannot sweat off a fever, causing it to escalate quickly."
Despite making many friends at school, Hanna hears cruel comments from strangers and is stared at for looking different.
In a bid to combat this and raise awareness, mum-of-three Megan has taught her to approach people and explain her condition.
Megan said: "Rather than shying away and letting their stares hurt her feelings or make her uncomfortable, I encourage Hanna to talk to people about Ichthyosis.
"She tells them, 'I have ichthyosis, which makes my skin grow super-fast' and other short, simple answers.
"A lot of people don't know how to ask about her condition or their questions come out the wrong way, so we just act graciously and as kind as we can, even though sometimes it's hard."
Megan says that after understanding the condition better, people are less judgemental.
She added: "They smile and say, 'wow, she's beautiful' or after she has explained her condition to them they tell her that they found it very interesting.
"We have taught Hanna that everyone is given challenges and that we are all different, whether that's on the inside or outside, so she is not embarrassed by being different.
"Hanna is just like any typical child, she's happy, excitable, she wants to try everything, loves sports, musical instruments and dances too."
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