Raymond had the mentality of aproximately a 3 year old and was living in a New York State run group home. He was completely dependent on others for his every need. He was severely retarded and had epilepsy, cerebral palsy, spastic quadriplegia, scoliosis and esophageal reflux disease. All these ailments lead to him being unable to talk, walk and eventually unable to keep food down. In 2001 a feeding tube was placed into his abdomen.

On 11/28/05 Raymond was admitted to the hospital because his feeding tube was not functioning properly, causing stomach acid and his liquid nutrition to leak out onto his abdomen. This resulted in infection and a break down of the skin inside his abdomen and on his stomach and side. Ray’s body in that area was so irritated and infected it looked like raw meat.

After 3 ½ weeks of removing the tube and replacing it several times while trying to clear up the infection, little improvement was shown. He was sent back to his group home on 12/24/05, only to be brought back to the hospital again on 1/13/06. He was not retaining nutrition through the tube and was in extreme pain. With no other options available the doctors removed the feeding tube and an IV line was put in to keep him alive with artificial nutrition. At the end of Ray’s ordeal in the hospital his weight was down to a mere 70 lbs on his six-foot frame.

Ray was released to a skilled nursing facility on 1/26/06 in the hopes that his stomach would heal and they could put in another feeding tube, but upon questioning Ray's doctor he didn’t seem optimistic that another feeding tube would work.

Once Ray was at the skilled nursing facility we were asked to decide whether or not to take Ray off artificial nutrition and hydration to let him pass on. Once we made the decision to take Ray off artificial nutrition and hydration we were told that our family had no rights regarding that decision. Ray was a ward of New York State and hadn’t been appointed a guardian to make such decisions for him. His own parents nor anyone else in our family could decide to end his suffering.

While we were going through court proceedings to get guardianship we had to watch Ray suffer bouts of vomiting, excruciating pain as his stomach acids continued to leak onto his abdomen, staff infection, blood infection, infection of his IV lines and a bowel obstruction to name a few of his aflictions. He suffered fevers that required Tylenol and at times another drug to bring them down. The pain patch and morphine given, at times, every three hours didn’t seem to control Ray's pain. We sat helplessly by only able to hold Ray's hand and try to bring some sort of comfort to him. Imagine going through all of this with the mentality of a child. That’s what Ray endured until he passed away on 3/21/06 before our family could gain guardianship.

If you know of anyone residing in New York State who's plight is or was similar to Raymond's, we encourage you to share your story with us at arayofhope@roadrunner.com.

***A book has been written about Raymond's moving story and is now available through the links listed below***