Alyssa

"If your rip a butterfly's wing," explains Alyssa, "it can't fly."  In a soft whisper she goes on to describe how it's the same for her skin.  "If I tear it, then we have to wrap it so it can heal."

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Alyssa considers herself a Butterfly Child, a term used to describe kids whose skin is so delicate, even the slightest pressure can cause severe blisters. At birth, her body was covered in air bubbles, missing patches of skin and ulcers. Her parents were devastated. They worried whether their baby would make it home from the hospital's neonatal intensive care unit. Alyssa was eventually discharged, however, with a very difficult diagnosis - Recessive Dystrophic Epidermolysis Bullosa (DEB) - a connective tissue disease affecting the skin and mucosal membrane.

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For Alyssa that means there is nothing to prevent her two layers of skin from moving independently of one another, resulting in friction and skin fragility. Shearing occurs because of a mutation in the Collagen alpha-1 (VII) gene, a protein chain that functions as an anchoring fibril between the external epithelia and underlying stoma.

 

The resulting wounds are both exterior and interior. Alyssa has a hard time eating because of the constant pain in her esophagus, even though she needs the extra calories to regenerate her quickly deteriorating skin. She is also exceedingly careful to avoid any type of infection, which means she is constantly dressing and redressing her wounds.

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Socially, Alyssa has overcome many hurdles in school and now can write her own homework. She has worked hard to convince her peers that her condition is not contagious in hopes of making friends. Alyssa's mother Katrina is determined to make sure she has as normal a childhood as possible. "For the longest time we sat there and blamed ourselves," said Katrina. "But you can't blame yourself for not knowing. So from there we just had to find a new normal."

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One look into her steel bleu eyes dispels any sense of pity one might feel based on her condition. with creatively and enthusiastic wonder, Alyssa giggles her way into conversations eager to know what others are discussing and most importantly, if anyone needs help.

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With delicate determination, Alyssa takes her time with everything she does and has established an impressive balance between avoiding injury while remaining active and playful. Although the goal may be striving towards normality, with generosity abounding and an irresistible laugh, Alyssa is exceptional in every way.