Meet the little girl whose sheds her entire skin every day due to rare condition
By Josh Saunders
Meet the little girl who sheds her entire skin every day due to a rare condition that makes it grow faster than normal.
Adorable Hanna Barrott, 6, from Ooltewah in Tennessee, USA, has lamellar ichthyosis – a genetic skin disorder that makes the skin cells rapidly generate and shed.
She was diagnosed with the condition that affects more than 600,000 worldwide after being born with a thick white layer of skin called ‘collodion membrane.’
Hanna undergoes a twice daily lotion routine to prevent her dry skin from cracking, bleeding and getting potentially fatal infections.
Parents Megan and Tyson, 26 and 30, monitor their little girl for overheating because her sweat glands are blocked by skin which can cause her to faint.
In public, brave Hanna defies strangers’ stares and rude comments, including that she looks like she is ‘severely sunburnt,’ by explaining her condition to them.
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.
“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% 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.”
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.
Megan said: “Just twenty minutes of regular child play in weather above 75 degrees Fahrenheit (23 degrees Celsius) 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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