Lexi (born August 2011) is a strong, sweet girl who loves to play games and read picture books with her nanny! She was born with a skin condition called epidermis bullosa which needs extra care and attention; her skin is easily affected by friction and even small knocks, resulting in painful blisters and sores. She must eat soft foods in order to minimize irritation caused by chewing and swallowing.
Her skin condition has taught her she must carefully protect herself from bumps and friction. Other caregivers and less-familiar staff avoid holding her in order to prevent skin irritation—only her experienced nanny will very carefully hold her to give her the warmth and affection that she needs. Her caregivers say that she is sensitive and wary of strangers, but she seldom cries except when her bandages need to be changed. She has received special care to minimize her pain, and her caregivers are constantly looking for better medical treatment to improve her condition.
Updated information tells us that she fares better in the winter compared to the summer months, and that they use powdered medicine to help her skin heal. Her growth report indicates that her cognitive development is normal compared to other children, and that she can express her needs and feelings, though at times her speech is a little unclear. She can count blocks and can answer questions such as “where do you live?”. She has good fine motor skills and can use a utensil to feed herself as well as wash her hands on her own. She is slowly improving her balance and can walk slowly by herself. Her caregivers say that she rarely ever becomes sick, and has no known food or drug allergies. She is still in diapers and needs a little help from her caregivers when putting on her clothes.
WACAP received updated videos of her talking with her caregiver, following directions, putting on her coat, and playing on the playground! It appears from the video that her skin condition has somewhat improved with special care from her dedicated caregivers. WACAP is offering a $4,000 Promise Child Grant for qualified families! Email WACAP for more information!