^^Angel^^ David - Quilt Finished in 1999

Born: January 9, 1995 Passed: April 30, 2000

Illness: Batten Disease

David's Story

written by mom Terry

David was born on January 9th, 1995. He was a small miracle to us as we had lost our two daughters before. One was lost at birth and the other to a brain disease. David was born a healthy happy baby. After his third birthday he started having seizures.

Doctors thought that the daughter we lost before David was born, had Batten Disease. She was never tested because at the time they hadn't found how to test for Batten Disease. We called the BDSRA (Batten Disease Support and Research Association) people and got information on the new testing for Batten Disease. We sent the blood samples to the research lab and after six weeks got the terrible news, David had Batten Disease and was dying.

Our lives were crushed. There is no cure for Batten Disease and it robs the children their motor skills and more. David had already lost some of his sight, ability to walk, he could not talk and he had seizures. As his sister did, soon David lost the ability to do anything on his own. He had to be fed through a tube in his stomach, he needed constant care and we knew he would not live to be 10. David loved having his big brother play with him and his little sister tickle him. He loved eating popcorn or cookies when watching Barney videos. We were able to keep him out of hospitals because we had been through it before and the doctor helped us with his seizures. It was a hard thing to watch one child die but even harder to watch your third go.

David died peacefully on April 30th, 2000 after have a few weeks of stopping breathing and a lot of seizures. The day he went to Heaven we knew it was time. He left us while listening to his Barney tape.

Since then we have planted a garden in all our Angels memory. This way we can plant something new on their special days. We even have statues of Angels. After Hurricane Isabelle damaged our village terribly, we realized we saved our home but one of our Angels went missing. We were blessed that a nice lady gave us one with a little boy hugging a teddy bear. It is our David to us.