Pastor Bob Barr

My husband's father, Bob Barr, was born in Malawi Africa. His brother and sister -in-law still live their and work with SIM Malawi. Their kids are still their and have started Kindle Orphan Outreach. Bob was a pastor of a large non-denominational community church in Fairport N.Y. He died 16 years ago of ALS. Even though Mark and I met in high school and were very good friends, I did not know his dad at all really, which was odd. It is odd to be so close to someone and not really know someone who is so important to them. When his father was diagnosed I was a sophomore in College. I remember getting the phone call and I am pretty sure I said something really stupid because I did not know what ALS was. I did not know that you die from it. I remember Mark was frustrated with me when he called me. We stayed close during this time while Mark left school and ultimately went home to live with his dad during his last years. I know that time with his father is precious. We were dating by the time I actually sat down and had a conersation with Pastor Bob. He was 3 years into the diagnosis and the conversation was done via a computer "light talker" because one of the first things he lost was his voice - wouldn't you know it - the man whose profession was speaking and who had an incredible singing voice- looses the voice before other muscle groups. It is different in everyone. That conversation felt a lot like the "I need to meet the person whom my son will spend the rest of his life with" even though we were not engaged and I was leaving for California, it is like he knew that. (Maybe Mark had told him)

Anyway- he died on April 2, 1991- and we were remembering this yesterday when there was a Frontline episode on ALS called "So Much So Fast". It was too much of a coincidence. The story is a remarkable one (like many ALS stories) of a man who was only 29 when he was diagnosed and he was in love and he got married and had a baby- all while he was loosing his ability to walk, talk, hold that baby, and hug his wife.

They call it an "orphan disease" because there are not enough people who have it to finance the amount of research that needs to be done to provide medication or a cure for this disease. And when you are disgnosed you are lucky to live 2-4 years so people do not live long enough to become really vocal or take up the enormous cause. But this family, that was on Frontline, did. I wish I had a picture of Bob to post for you...but I don't so here is his son. My love. With his baby boy.