Wednesday, April 25, 2012


This is a hard blog to write, but here it goes.

We got a diagnosis from our St. Louis doctors, and it’s about as bad as we could imagine. William has Neuronal Ceroid Lipofuscinoses or more commonly known as Late Infantile Batten Disease,   He is getting genetic testing to verify this diagnosis Friday, but the results won’t be back for several weeks. We have little hope that it’s a misdiagnosis because we feel the doctors wouldn’t have given us this devastating news without being sure.  

There are about 200-300 children in the U.S. with this horrendous disease and 1,200 in the world. It’s classified as an “orphan disease” because it’s not economically feasible to find a cure for only 1,200 kids. There is a clinical trial at Cornell University Hospital in New York that is an option, but we have time to think about that because they need the genetic testing results to accept a patient. The research involves injecting stem cells into the brain, and isn’t a cure.   It might slow down the progression somewhat, but that’s all.

We really appreciate your concern and prayers! As you can imagine, we are having trouble dealing with this, and find it hard to talk, or even think, about it without crying.   We are trying to take this one day at a time and even that seems overwhelming!

We will keep you updated through William’s journey.  Please keep us in your prayers!!


  1. Our hearts and prayers are with you and your faimly. If we can do anything at all, please plesase let us know.
    Love to all,
    Deenie & Ross Swarthout

  2. Praying for you and William! Let me know if I can do anything for you!

  3. There are no words... you all have been on my mind nonstop since I heard about it yesterday. I too have shed many tears! You have all our love and prayers being sent your way. PLEASE let us know how we can help! We love you all!!
    Jenn, Al, Forest & Sophia Konwerski

  4. Braley, I am so proud of you for sharing your and William's story. I cannot even imagine how hard this must be for you. But I know your sharing your story will touch many people! I hope you know we love your whole family and would love to do anything to help that we can. Please don't hesitate to call if you need anything at all. Love, Mindy, Seth, and Elem

  5. I have a 3 year old little boy and wanted to let you know we will pray for William. Thank you for being brave enough to share and ask for prayer.