For all interested, in case this hasn't been posted before on this thread, here is the link to the family's blog:
http://ashleytreatment.spaces.live.com/blog/
excerpt from above link:
Ashley is a beautiful girl whose body is developing normally with no external deformities; see photos. She is expected to live a full life and was expected to attain a normal adult height and weight. Ashley being in a stable condition is a blessing because many kids with similarly severe disabilities tend to deteriorate and not survive beyond five years of age.
Ashley is alert and aware of her environment; she startles easily. She constantly moves her arms and kicks her legs. Sometimes she seems to be watching TV intently. She loves music and often gets in celebration mode of vocalizing, kicking, and choreographing/conducting with her hands when she really likes a song (Andrea Boccelli is her favorite we call him her boyfriend). She rarely makes eye-contact even when it is clear that she is aware of a persons presence next to her. Ashley goes to school in a classroom for special needs children, which provides her with daily bus trips, activities customized for her, and a high level of attention by her teachers and therapists.
Ashley brings a lot of love to our family and is a bonding factor in our relationship; we cant imagine life without her. She has a sweet demeanor and often smiles and expresses delight when we visit with her, we think she recognizes us but cant be sure. She has a younger healthy sister and brother. We constantly feel the desire to visit her room (her favorite place with special lights and colorful displays) or have her with us wanting to be in her aura of positive energy. Were often huddled around her holding her hand, thus sensing a powerful connection with her pure, innocent and angelic spirit. As often as we can we give her position changes and back rubs, sweet talk her, move her to social and engaging places, and manage her entertainment setting (music or TV). In return she inspires abundant love in our hearts, so effortlessly; she is such a blessing in our life!
To express how intensely we feel about providing Ashley with the best care possible, we would like to quote from a private email that we received from a loving mother with her own 6 year old Pillow Angel: In my mind, I have to be immortal because I have to always be here on Earth to take care of my precious child. Taking care of him is difficult, but it is never a burden. I am [his] eyes, ears and voice. He is my best friend, and I have dedicated my life to providing joy and comfort to him. To my last breath, everything I will ever do will be for him or because of him. I cannot adequately put into words the amount of love and devotion I have for my child. I am sure that you feel the same way about Ashley.
The chance of Ashley having significant improvement, such as being able to change her position in bed, let alone walk, is non-existent. She has been at the same level of cognitive and mental developmental ability since about three months of age.
Faced with Ashleys medical reality, as her deeply loving parents, we worked with her doctors to do all we could to provide Ashley with the best possible quality of life. The result is the Ashley Treatment.
I too am shocked, at the news media’s obsession with invading peoples private lives, and casting a spot light on their most undignified difficulties.