This is our inspiration, Sequoia D Chavez, who was diagnosed with Prader-Willi Syndrome at four months of age. Although she has many of the medical characteristics of PWS, such as sleep apnea, aspirating pneumonia and abnormally small feet and received most of her food through a gastrointestinal tube on her belly, she has no idea what she is "not" expected to achieve. She loves reading books, music, playing with her dog and cat brothers and swinging in her tree swing. Although she was hypotonic (low muscle tone) at birth and could move very little, she is now crawling all over the place and pulling herself up.
But, there are stiill so many unknowns as to the extent PWS will affect her life. Will she have the physical and mental limitations and behavorial problems associated with PWS? Will she be able to live a normal adult life and have a family of her own or will she need to live in a group home where all access to food is strictly controlled. Hopefully, our efforts and those of the Prader-Willi Syndrome Association will not only answer these questions but resolve them.
