Another trip to Duke



If you ever need it to rain in NC just have us schedule a Dr’s appointment at Duke for the boys. We are still in drought conditions and water restrictions and it rained the whole 2 hour trip to Durham and back. On the way back it rained very hard. Actually a pretty good visit, we upped Brandon’s seizure meds and got Jeremy something to help him sleep better. To prove to Dr Gallentine that he has been having trouble with his eyes Jeremy accidentally ran into one of the chart holders on the wall outside the exam room and put a little gash on his forehead. The boys are enrolled a genetic study for patients with seizures which required either a blood draw or saliva sample, guess which one the boys chose?

Jeremy has been thinking alot about the disease as his eyesight has been detiorating rapidly over the last 6-8 weeks. He had a discussion with Wendy the other day that he initiated about dying. He doesn’t want to die and he doesn’t want Brandon to die either. Then he asked Wendy if she died first would she come back as an angel and take his Batten Disease away. What do you say to that?!?!

We just keep taking it a day at a time, nothing more, nothing less.

Countdown is on for our big day, I feel better about how prepared we are this year, but I am sure something will happen to throw that out the window.

Thank you all for your thoughts and prayers, we need them each and every day!

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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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