Aubrie has ectodermal dysplasia and her case is very rare. Her skin on her body are very sensitive to light and is very frail. She was born with 80 percent of her first layer of skin gone. It grew but is now so frail a normal cut that would heal for us takes her 3xs as long to heal. She gets very sick easily and the same thing it stays with her for a while. She was born with a cleft lip and pallet and has had numerous surgeries to fix. She is photo phobic and sensitive towards light and the sun so she has to constantly wear sunglasses and caps to keep her eyes & head safe cause she cannot grow hair on her head. She has many drs and many appointments for her care because she has numerous things going on with her with her joints muscles and everything. She has fused eyelids because she is partial blind and has to have drops in her eyes constantly. She is fully deaf and has a bone conductor to help her and she is very fluent in sign language . She is tube fed. Her self esteem is better now with people because some people dont understand her and can be afraid or hurtful towards her. But if u know Aubrie, she is a happy - sweet person. If anyone should be granted a wish it should be sweet Aubrie.
My wish would be for a gift card for Aubrie to go shopping. She loves to shop!
Today we granted a big for sweet Aubrie with a surprise visit to her home, a $1,000.00 gift card to go on a shopping spree today and a plush limo to go/from the mall!