April 6, 2011 update

With one month to go until ourboys 5k things have been kinda crazy around the Hawkins home.  Brandon is still struggling with seizures that have been very disruptive, mainly at school.  He has been having a seizure or related event about once a week for the last 6-8 weeks.  He is currently doing a 36 hour EEG, he is hooked up to to 23 different leads monitoring brain activity that is recorded on a back pack like device.  Or as one friend put it, a European man purse.  :0)  We go back to Duke tomorrow to remove the device and hopefully we can get some additional information about types of seizures, etc.

Jeremy has experienced an increase in stuttering to the point that he sometimes just gives up what he is trying to say and his vision loss has increased over the last couple of months as well.  But he HAS gained an almost teenager like attitude that is funny but is bordering on insubordination, but I will take it for as long as necessary!

Now for more about the 5k.  We would like to thank several sponsors publicly including Team Carneglia Real Estate,  Dr Trego at EyeOptix, Ryan Foot and Ankle Clinic, Blu Energy Drink, Defeet Performance Socks, and DDI promotions.  Giveaways this year will include either performance socks or stainless steel water bottles on a first come first served basis on the morning of the event.  We also would like to thank On the Mark Sports for providing our timing this year!  Also big thank you’s to Kevin Brown, Mike Carneglia, Andy Brown and Jeff McGonnell for your time and effort!!!!!  Please visit  http://www.sportoften.com/events/eventDetails.cfm?pEventId=6343 to register. Please email andy.brown@wellsfargo.com if you are interested in volunteering some time that morning.  We will have a fire truck available for the kids to check out and we are working on having the Concord FD Smoke House out as well.  If the weather is nice we will hold our carwash again, this year the car wash will be in the front circle at Harris Road Middle School rather than the bus lot.

We hope you can make it out for the event as a participant, volunteer or just to bring the kids for a little fun!!!

Another seizure today……  😦


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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