BY: NETIZENS JOURNALS
Maddie Hoffman, a 9-year-old girl from Burleson, Texas has been battling from a deadly scaling condition called Epidermolytic Ichthyosis.
(Photo credit @Caters News Agency)
Epidermolytic ichthyosis is a rare, genetic skin disorder. It becomes apparent at birth, or shortly after birth, with reddening, scaling and severe blistering of the skin.
Her rare condition causes her to shed skin all over her body which might confuse for a burns survivor by strangers due to the reddish appearance of her skin. She also bullied at school for her odd appearance and odor caused by the disease.
She has to undergo a two-hour routine every day to remove dead skin cells and protect her from catching a life-threatening infection. Her skin can grow up to ten times faster than normal, peels and becomes so dry in which she is having a hard time to move. However, it is believed the treatment improved her condition.
(Photo credit @Caters News Agency)
Her mother, Emily, told her daughter that she may not survive after she was born but because of the daily scrubbing helped her to keep Maddie alive.
She wasn’t able to hold her until she was seven days old, and has to put her in an isolation room, and had to wear gloves and a mask.
She recounted:
'It was visible at birth that she had ichthyosis and shortly after that all the layers of skin fell off in sheets, she was bright red and looked like a burn victim”
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The ER doctor told us, "You realise your baby may not survive? It was very scary, she was touch and go for the first two weeks.”
“Ichthyosis can be deadly when a baby is first born, Maddie needed to remain hydrated, stay infection free and quarantined, we even had to put on gloves to touch her.”
Maddie’s mom is worried about her condition since she has the most severe forms of the disease which required extensive treatment every day.
(Photo credit @Caters News Agency)
She added:
‘She has one of the most severe forms of the condition, requiring aggressive and painful treatment administered for up to three-hours every day.’
'The build-up of scaling is her worst enemy, the more it layers up the more likely she is to have skin infections, can't bend or move.
'Each hour that goes by, her skin gets harder for her to move, she gets drier and starts to flake-off.
'There are days where she can barely move, the most affected part is her feet, any friction causes blistering, even socks and shoes affect her.
'We have a daily battle with her blisters and her not being able to walk, these are open wounds so we have to work tirelessly to stop them from getting infected.
'If she has an infection on her feet, time can be critical to get it curated, she has been hospitalised for severe infections and the most dangerous type of MRSA.
'If it's not dealt with immediately with antibiotics, the infection could get into her bloodstream and she could lose limbs or die from this.”
Maddie was diagnosed with epidermolysis ichthyosis after being born prematurely at 33-weeks. This rare disease affects one in 200,000 people.
Doctors immediately put her to the intensive care unit where she was isolated to avoid contracting a deadly infection.
Her mom, Emily also having ichthyosis herself saying that her daughter is a much more severe form that requires meticulous skin routine.
Emily narrated:
'Before her routine the skin is white, very scaly, extremely dry and itches a lot.
'Without the routine, she wouldn't be able to walk, the skin build-up would be very thick, the odour would be bad and she could die from infection.
One day in the bath we use diluted bleach and the next baking soda, it helps soften and soothe her skin, it's very calming, helps with itching and reduces the build-up of scaling.
'We have to get as much of her scaling off through scrubbing every morning so that she isn't restricted as much, every hour her skin gets drier and begins to crack.'
Her skin condition also affects her ability to move which also required hours of therapy to help her.
Emily added:
'Everything we take for granted cannot be done by Maddie without a lot of practice or determination.
'Before she couldn't open a bottle of water or barely grip a pencil because of the skin build up, so she needs weekly occupational therapy.
'Despite this she puts a brave face on in her videos because she wants to raise awareness and is a very happy child.'
Emily is determined to raise awareness about ichthyosis in the hope to lessen the stigma surrounding the condition and hoping that someday a cure is found.
It is so hard and disheartening for her mom to see her daughter bullied at school, how people stare at her with disgust, but despite all this, Maddie stayed happy and very positive who wants to teach others that it’s okay to be different.
(Photo credit @Caters News Agency)
Emily said:
'Bullying is a big deal for her, she goes through a lot of stares and teasing, kids get nervous seeing her skin shedding and bully her about her odour caused by the skin build-up.’
'It's hard to watch as her mother, seeing people stare at her and look with disgust, it's very disheartening which is why we try to speak out.’
'Maddie wants to help children, in general, to stay motivated and positive, we try to teach others that it's okay to be different.’
'But in spite of everything Maddie's going through she is an extremely happy and positive girl who loves to help others and is determined to raise awareness.'
Maddie has dreams of dancing with Ellen DeGeneres to raise awareness of her condition. Her mom who is a single mom is fundraising for her daughter’s care since they have been rejected disability allowance.
She added:
'As a single mom without a lot of support for her condition and other children to take care of too, it's very hard for us, ichthyosis is very financially draining and a strain.
'But we try to stay as positive as we can and take each day as it comes, in the hope one day there will be a cure.'
(Photo credit @Caters News Agency)
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