I can take a hint


So I’m talking to my dad on the phone last night and he says “So, you haven’t updated your blog in a while.” OK, I can take a hint. So here I am.

Brandon is a very sensitive boy, and despite his struggles with Batten Disease he still cares so much about others. Our friends and fellow Batten parents,times 2 like us, the Lowden’s had their 4th child this morning. When I was saying good night to Brandon last night I mentioned that Eric’s mom would be having a baby very soon, and he got quiet. Then he said something that I will never forget “I hope the baby doesn’t have Batten Disease.” Wow. I explained that they had the baby tested while in the womb and she did not have Batten Disease. He was fascinated by how they could draw blood, etc but it just struck me that here was this brave child who is losing his sight, having seizures, sometimes acting out and not knowing why, forgetting names and faces and words and he remembered to hope for someone else not to go through what he is going through. It brings tears to my eyes just typing the words.
I am so blessed.

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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.

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