Inspiration and exhaustion, all at the same time

I just returned from only my second BDSRA conference, but I can already see how important they are in the lives of those affected with Batten Disease, including myself. Just like last year, I found myself on a roller coaster ride of emotions sometimes laughing as the tears poured down my face. The most emotional part of this years conference for me happened on Friday morning during the general session. I had spent the evening before helping set up the Batten Disease Memorial wall and mingling with families that I know as well as new families. Near the end of the general session two of the presenters had pictures of their affected children in their presentation. I see these beautiful children and realize what is happening to them and it just breaks my heart. I am already fighting back tears at this point when a new documentary filmed and produced by the Lewis’s began. The first 15 seconds of the film includes a picture and audio of their son in the bathtub drinking the water out of the faucet. I lost it. I got up and headed out of the room before I made a scene, but I was still sobbing as I left the room. Not sure why it got me so good but it did. Thank you to Lance for understanding as he passed in the hall. It took a few minutes but I returned to watch the rest of the film. It is very well done, and will be presented to PBS for potential airing.

On the other side of the coin, I continue to be amazed by the strength and resiliency of the families dealing with this horrible disease. When you see the joy in parents and non affected children as they interact with the affected kids it is really something special. I am amazed at the siblings at how much they love their brothers and sisters and other affected kids. And parents and grandparents of Batten children display a lesson in unconditional love each and every day. It makes me proud to be associated with them.

I would like to publicly thank Charlie Leffler and the Batten Memorial committee for their work in putting together the memorial wall. I realized in helping set up and tear down the Memorial what an amazing piece of engineering it is and you only have to watch Charlie and the others work with it to know how special it is to them. From now on I will always hold it close to my heart.

I am excited to be a part of the national Board of Directors for the BDSRA and look forward to working with the other board members to continue the amazing work that has gone on before us.

Please check out the photo page of the website, I have posted pictures from my camera of the whole weekend. The scenery pictures are from the Red Rocks Park and Amphitheater which was amazing!!!!!!

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.

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