Running to Beat Batten Disease

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On Saturday, April 12, my regular walking buddy, Carol Baldwin, and I got up a little earlier than usual for our walk.  We got in the car for this one, and drove to Harris Road Middle School in Concord, where we were just in time to pick up and change into our blue T-shirts and join the back of the line for a 5K run (walk).  We walk regularly together in our neighborhoods, but we went out of our way for this one, sponsored by Wendy and Chris Hawkins, whose sons Brandon and Jeremy both have Batten Disease.

As Chris describes on their website www.ourboysjourney.com, “Batten Disease is a terminal illness that begins to manifest itself between the ages of 5-8 years old. Usually the first signs are vision problems, and in Brandon’s case learning difficulties. Seizures and short term memory loss are also a big part of this disorder. Although the how and why this happens still hasn’t been discovered we do know that it is a devastating neuro-degenerative disorder. A once healthy and thriving child,over time, loses the ability to see, walk, talk and even to swallow.”

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Brandon Hawkins, always with a smile!

I met Brandon when I taught at Dore Academy (now John Crosland School).  I never had him in my class, but the school was small enough so that we got to know all the students via the playground, the lunch room, or through various activities.  I was there the year he was diagnosed with this terrible disease, after we all witnessed a steady decline in his vision and learning abilities and the onset of seizures.  It was gut-wrenchingt to watch from a teacher’s point of view, and none of us could imagine what Wendy and Chris must have been going through when, in the same year, Brandon’s younger brother, Jeremy, received the same diagnosis.

 

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Brandon and Jeremy hug their mom!

In my life I’ve observed two kinds of reactions to devastating news.  It seems you either check in or you check out, and in Wendy and Chris’s case, they checked in with more than 100% involvement. For the past eight years they have sponsored Our Boys 5K/10K, channelling all the proceeds into the Batten Disease Support and Research Association, a 501c3 organization. BDSRA is the largest Batten Disease support and research organization in North America, with affiliates around the world.  Families dealing with Batten Disease rely on them for education, family support, advocacy, and research funding.   If you check out the Hawkins’ website listed above you will see that they are and have been involved in supporting many other events fighting for the cause, including those sponsored by Laura King Edwards, whose sister, Taylor, is also afflicted with the disease.  Laura is another example of someone giving more than 100% to help fight a disease in the process of stealing away a loved one.

When Carol and I finished our “walk” in less than an hour, we looked at each other somewhat sheepishly, realizing it was no more strenuous than our usual neighborhood walk.  It was such a small thing to have done for such an important cause.  Because Batten Disease is so progressive, the Hawkins family is now experiencing a whole new level of needs, including a wheelchair accessible van and conversion, expected modifications to the home, and even things like YMCA memberships to enjoy swimming year round. You may donate to a special needs trust fund to address these issues here or you may want to donate to BDSRA.

If you have children of any age, I hope this post is tugging at your heartstrings enough to prompt a click on one of the links above.

 

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Hey READERS, I would love to hear from you.

Is your MIND FULL of old thoughts or new?

 

 

 

 

 


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