Dear Friends,
Our daughter Sarah turned 27 years old in December. She has lived at New England Pediatric Care nearly 24 years since illness caused irreparable neurological impairment. Our experience with her long term care continues to inspire us to help children and their families in similar straits.
Sarah’s health is stable and doctors were recently able to remove her tracheostomy tube which has helped her breathe for many years. She cannot ambulate or consistently control her limbs but is able to use switches to interact with computers and her environment. Although she receives her nourishment through a feeding tube, she is also on a tasting program to experience the pleasure of small amounts of food such as yogurt or applesauce.
We will probably never know how much Sarah understands of the world around her. She vocalizes at times and responds to our voices and touch. She smiles and can also express a negative opinion when she doesn’t like something. Overall she seems content. We continue to visit Sarah frequently and hope she feels loved and safe.
The world is constantly changing, but for some people it stays the same. This issue of H.A.L.O. Reports shares how people brighten their days.
Thank you for your continued interest and support of H.A.L.O.
Yours truly,
Alan Pinshaw M.D.
