An 18-year-old girl from Pennsylvania was so delicate and fragile that she had to fed through a tube and she cannot be hugged by anyone, the Metro reports.
Madisyn Yuhas suffers from a rare genetic condition called Recessive Dystrophic Epidermolysis Bullosa, which means that her “skin can tear off with the lightest friction,” according to Metro.
Madisyn has to wear thick bandages to cushion her fragile skin from the neck down and has to be fed through a tube because chewing food can result to blisters inside her mouth.
People who have the condition are also known as butterfly children, referring to the fragility of the butterfly’s wings. They cannot be cuddled, hugged, or anything that could cause the slightest friction.
Mary Yuhas, Madisyn’s mom, said, “There is no cure for Madisyn’s condition so every day is a struggle for her. Any time she brushes up against something, if she opened a door, slipped on her shoes or even moved in bed she could tear her skin.”
Mary continued, “Once at school when she was standing in line, someone stepped on her foot and it ripped the whole top layer of her skin off, right down to the muscle.”
Due to her condition, Madisyn only weighs around 85 pounds. However, she requires more calorie intake than a regular teenager to compensate for the demands of repairing the wounds and skin damage. Protecting her from infections such as MRSA also consumes a lot of energy.
Mary explained, “The pain means she eats very little and requires nightly liquid feedings through the tube. If we can’t get fluids or meds into her she has to be admitted to hospital. To lessen the effects, we wrap her up entirely in bandages from head to toe for protection.”
Madisyn has to take baths daily and it has to be as long as four hours. Any blister that would form has to be popped to prevent infection. These are the only things she and her mother can do to prevent her from dying.
Mary said, “Every other day we give her a bath with bleach in the water to keep the infection down, after that we do the typical limb dressings and treat anything new that’s came up.”
She continued, “We lance the wounds to make sure they don’t grow, after taking out the fluid we give her antibiotics, and wrap her up.”
Madisyn’s condition affects one in 20,000 people. As soon as they discovered that she was born without any skin from her knees to her toes, doctors already know that she has the condition.
Mary said, “We bandage her from the tailbone to the back of her neck, her feet, occasionally we can leave her arms and hands unwrapped, but she’s pretty much always covered up.”
Madisyn’s case just kept on getting worse as time went by. At her early years, Madisyn used to take dance classes. But she had to quit since the movements were causing extreme pain to her. She now moves around in a wheelchair.
