What is Batten Disease?

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.

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About

I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

Posted in Batten Disease, Uncategorized
13 comments on “What is Batten Disease?
  1. Mike says:

    Chris you Wendy and the boys continue to be an inspiration to my family. Please know we are always there for you.

  2. Kari says:

    I never thought about it that way….that pharmaceutical companies would not “make money” because there are not enough cases. I was just talking to a friend the other day who has Leiden Factor V, which is just a genetic disorder that increases the chance of blood clots and if a woman knows she has it, she should take birth control pills…we were talking about how terrible it is that womean are not routinely tested for this BEFORE they ever go on birth control pills. But that is nothing compared to this injustice! I have always naively assumed that every disease, especially a fatal one, had ongoing research to find a cure – that everything that could be done was being done! This is just heartbreaking and my heart goes out to you and your family. I cannot imagine the difficulties and sadness you face every day. I know that you cherish every minute you have with your boys and they are so blessed to be born into a family that cares for them like you do.

    • chawk328 says:

      Thank you Kari, we do have sad times, but one of the things that I also want to stress is that we also have times of overflowing happiness that we have these beautiful boys in our lives!!!!!!!!!

  3. elaine says:

    We are praying for a miracle in your family , I know my God can heal your son’s, there is power in prayer in the hands of the almighty God In heavens, it seems these companies would try to fund a cure , they are for everything else under the sun.Can I call your family”s name out in prayer Sunday at church? I will stand in for the Pastor to annoint me on behalf of your family….What a Mighty God We Serve..Love and prayers to you all —from Rockingham North CArolina

  4. Melissa Treadaway says:

    Chris,
    I found this link to your blog on the front page of charlotteobserver.com. Congrats! You are certainly doing your part to raise awareness.

    Your family is always in my thoughts and prayers. Melissa

  5. Patrick says:

    I didn’t make it past the first paragraph before tears flowed. I know I have never met you guys but my hear immediately goes out to you. Once I hit 40 I seem to have more worries about health and get all wacked out. Had something today and was bumming and I read this. You and your boys are inspiration and all my family and I can do is pray as well. I will have my little girls on the case. Peace to you and yours.

    • chawk328 says:

      Thanks Patrick, we appreciate the kind words and the prayers, sometimes that’s all we have to get through a tough day. I am amazed by the outpouring of support that we get from friends, family and community. As much doom and gloom as you see in the news we can testify first hand to the kindness, generosity and compassion of people in this world. thanks for reading and forwarding our story on to help us raise awareness of Batten Disease!

  6. Thank you for sharing your blog. We (Sport Clips) will be happy to help out with your next race too. Let us know when you have the details. We also can put a poster or flyers in the store advertising the event when it gets closer too.

  7. Jenny Carter says:

    Your honesty and whole heartedness really touches the reality of Batten Disease. I wish you the strength and courage to keep on “Keeping On”. Remember those special moments and keep the boys close to your hearts always.
    I wish someone could change the future now for you and your boys, and hopefully in time they can. Never give up on HOPE. Things will move forward, we just need Battens Awareness…the more people know about it, the more fundraising can happen. You will find there are many wonderful people out there willing to help…you only need to ask.
    Stay strong.

  8. mary hughes says:

    i have a daugther with batten and she is 21 i just take every day as it camesshe allways asked me why me and i never know want to say to her

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