Tag: batten disease

An oldie but a goodie, dear friend Geri Calos has organized a night of painting and is donating $5 from each registration to Batten Disease Research!  Please consider signing up if you can, this is located at Sea Dog Brew Pub in Hull, Massachusetts! Click to register!

We recently, quickly updated the New England Chapter of the Batten Disease Support & Research Association from a Drupal based website to WordPress.

And a conversation about the road race and her Halloween costume!

Notice her speech and cognitive decline…. Just showing what Batten Disease is currently doing to Rachel.

We are currently in Colorado Springs, staying just one more night before we head west. Colorado has been riddled with multiple forest fires because of the extreme heat and lack of rain, dry lightning and a suspected arsonist. We were staying at the beautiful Garden of the Gods Campground but because of the high heat and the eventual smoke and nearby evacuations I moved the kids and I to a hotel in the eastern part of Colorado Springs (near Peterson Air Force Base). Today we are having lunch with some of my favorite people then we’ll come back here and do some swimming and tonight we are going to a Heather’s house of pets (haha Heather, I love you) and a simple, PASTA dinner. Pasta is one thing my kids really miss on the road. Tomorrow morning, before the roosters come out to crow, we are driving up through Denver, through Wyoming and staying the night in Utah. After one night in Utah we are driving to Eureka California and spending two nights there. We can’t wait to get to California, visit the pacific ocean and see / feel the Redwood Forest. That will effectively cross 3 more items off(read the rest)

Another Batten mom named Cheri arranged for Rachel and the kids to go horseback riding at the Colorado Springs Therapeutic Riding Center at the Mark Reyner Stables. When we arrived they were waiting and I was a little hesitant at first because most people don’t get Rachel, especially people who don’t know her. About 5 minutes into our session with the ladies and Bubba the horse I realized I could take a deep breath because they are very experienced with helping special needs kids with riding. One lady (Corey) led Rachel and Bubba and Nancy and her daughter walked on either side of Rachel and helped her with balance. I was most impressed with their handicap accessibility and the ramp they had to help kids mount the horses. It was a wonderful time for all of the kids and a memory I will treasure forever. Here is a link to their website: http://markreynerstables.com/

Today we met up with Heather, Nick and Sky (her boys) at the Omlette Parlour. Great food, even better company! Gotta love a place that serves up good, vegetarian omlettes! Check it out: http://www.co-spgs-omeletteparlor.com/ Picture: Heather and her son Nick

Due to the excessive heat in Colorado we have checked into a hotel for the remainder of our stay. Rachel had the pleasure of sitting in a hottub for a little while, something she really enjoys but doesn’t get to do too often. Life is good!

We went out to lunch with dear friends at Poor Richards in downtown Colorado Springs. Vegan, gluten free or anything else you could possibly want. It was the best food I’ve had in a very long time! Check out their website: http://www.poorrichardsdowntown.com/

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