Unless you know a family with a child affected by Batten Disease I am guessing that you probably have never heard of it. I certainly hadn’t before our diagnosis back in 2006. In honor of Batten Awareness Weekend June 4,5 and 6, I would like to tell you a little about my life with Batten Disease. Batten Disease is an inherited genetic disorder that causes blindness, seizures, cognitive impairment, dementia and eventually robs the child of the ability to walk, talk and even swallow. It is FATAL. No one diagnosed with Batten Disease has ever survived. No one.
For the most part, I have two of the happiest, most fun, most caring and most loving boys that you can ever hope to have as a parent. They laugh, they chase the dogs around the house, they fight with each other, they play “Daddy, pull my finger!” They also will most like not see their 20th birthday, they won’t play high school sports or drama, they won’t drive a car and they may not understand why they can’t move their legs someday when they can remember kicking a soccer ball.
My wife and I cry over silly things, serious things, and sometimes we cry for no reason at all. I cried when Brandon, my 12 year old, asked me when he could get his drivers license. I cried another time when he asked me if I thought he was ever going to get married. What do you say?? I cried just this morning when Jeremy was headed out the back door to the bus and looked over his shoulder and said” Bye Dad, tell Brandon I love him!” I cry when I remember how gifted Jeremy was at the age of 4 and 5 yrs old on a soccer field, realizing what could have been. But we also laugh at the dumbest things. Brandon splashed himself in the eye the other day and he said “Ouch, I can’t see.” The blind kid can’t see, imagine a couple second delay and then we both started belly laughing…….Above all else we live hour to hour, day to day and sometimes even minute to minute. We recently had to order a wheelchair for Brandon and install grab bars and a hand held shower in our bathrooms. Not something you imagine having to do for your 12 year old when that child is born.
Just like other rare diseases it is difficult to get big business to look for a cure and almost as difficult to get government help as well. The potential is there to spend billions of dollars to find a cure for Batten Disease, but the Batten research community is lucky if it gets a couple of million dollars per year. Big pharmaceuticals have said that they wouldn’t make any money healing the 500 some cases of Batten Disease, so they won’t spend money researching a cure. This means that not only do the families affected by Batten Disease raise their children in difficult circumstances, but they also provide most of the fundraising and money that goes to the research. The reason for this blog post is not to make you feel sorry for me, or for other families. It’s not intended to guilt you to make a donation, although that would be nice! My real purpose for this blog post is to inspire you to learn more about the disease and to tell your friends and family, to help us raise awareness. PLEASE help us raise awareness about Batten Disease on Batten Awareness Weekend. For more information or to make a donation please visit http://www.bdsra.org.