Teodora: Dystrophic

Our daughter Teodora, also known as Teya, was born in May of 2014. Teya was diagnosed shortly after birth with Recessive Dystrophic Epidermolysis Bullosa (RDEB). This was the beginning of our battle with EB.

EB is a rare and awful condition that affects her body inside and out. Seeing your child struggle and not being able to help much is the worst feeling as a parent. Most of Teya’s body is always bandaged in order to help heal existing wounds and prevent further blistering and tearing of her skin caused by minor friction or trauma. Due to her fragile skin, she is very limited in the things she can do without repercussions of EB. Going down the slide at the park always results in skin tearing, but that doesn’t stop Teya from living her life to the fullest. Her mouth and throat are also ​unfortunately affected. She is limited to soft foods as others can cause significant damage and subsequent pain. EB causes her fingers to fuse and contract which requires regular lifelong and extremely painful hand surgeries in order to maintain her hand function. Teya's life is full of challenges, but her strength and positivity prevail the evils of EB.  ​​

Teya is a witty 7-year-old who loves to make everyone laugh. She likes to draw, paint, play in the sand, and giggle (a lot). She loves animals, playing with her friends, riding the bicycle, and reading. Her favorite foods are pizza, pasta, and lasagna. She adores her younger brother and aspires to become a pediatrician and an art teacher one day. Teya is loving, clever, imaginative, and adventurous. We, as parents, look up to her as she has showed us first-hand what being resilient is and how to stay positive!
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Currently no cure exists for Teya or her friends battling EB. With your support, however, there is hope! Our efforts will eventually lead to further developments including a CURE. This will ensure that all affected can live a normal, pain-free, and lengthy life!
 
-Teya’s parents​