John Arthur Hall , Jr. (Jay) 

8/23/90-1/9/94

CS-2
 

Jay was born on Aug. 23,   1990.    Everything seemed to be fine, until about 4 months of age when he appeared to have a vision problem. Cataracts and underdeveloped maculas were diagnosed. Poor weight gain due to feeding problems led to placement of a G-tube & a Nissen Wrap at 2 years.     Still undiagnosed, Jay gained skills and was a very happy little boy.    He was de-velopmentally delayed, yet he worked very hard,  everyday,  to learn new things.    He was such a joy to us.    He loved taking a bath, grocery shopping, pinwheels,  and balloons. He loved smiling faces and to feel a breeze on his face.

Jay began to lose skills when he was 2.5 years old.    Finally, at our persistence, we were sent to New York City where the diagnosis of Cockayne Syndrome was made.    His condition gradually worsened and he was in a great deal of pain.    Christmas day we took him to the hospital because he was having Grand Hal seizures due to a high sodium level. After a week he was released.  He seemed to be doing fine, but one week later his respirations increased and he appeared to be wheezing. He had pneumonia. The next day, he began to weaken. We 'held him, loved him, and kissed him all day.  He quietly and peacefully went to sleep in our arms that evening.

Jay had a very hard, short life. We miss him tremendously, but feel he is in a better place. He now can walk, talk, and see! He taught us alot in three years and we are much better people for having known him.