And the birthday cards for Rachel came flooding in

Posted by in (Team) Rachel & Batten Disease, Birthdays, Blog

Almost a month ago I posted a request asking folks to send musical birthday cards for Rachel’s 15th birthday.  Our family has experienced the power of social media and the internet.  Last fall I posted a “Go Fund Me” seeking donations to help me purchase a wheelchair van as Batten Disease is taking Rachel’s ability to walk.  I was able to buy “Cartman” the low mileage wheelchair van at a very low price within a few weeks.  People are incredibly generous and kind.

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Posted by in Batten Disease, Kat, Life, Rachel

I spent a lot of time in the car yesterday driving. Driving to see the kids new school (which is on the other side of Denver) driving Rachel to respite (and back. Twice.) and running a bunch of errands.

When I got home from running my errands I found that my friend’s husband, who will probably kick my ass for not referring to him as my friend (which he totally is but we don’t admit it, or hug lol), had built Rachel this:


My parents, with the help of my brother, built something similar for Rachel back in Massachusetts so Rachel could enter my parents home. I never expressed my thanks because it’s too painful to realize that that is her future. Yes it is inevitable that she is completely losing the ability to walk but sometimes I just can’t face it.

So for what its worth: Thank you

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Clean Harbors – Gold Sponsors!!!

Posted by in Fundraising, Kat, Life, Rachel, road race, Sponsors








Thank you so much to Clean Harbors for donating $1000 to Team Rachel!  They have been so generous to our efforts to raise money for Batten Disease Research and we are so grateful.  Thank you!!!! <3

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No road race this year

Posted by in Life

Hello folks. I just wanted to officially announce on Rachel’s website that we won’t be holding the race this year. Between Rachel’s worsening condition and our family dynamic changing I just don’t have the energy or time to invest in the race this year. My number one priority in life is to make sure all 4 of my children are taken care of to my best ability.

I know lots of people are bummed about this but in my heart I know its the right thing to do.


– Kat

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July 31st Paint for Team Rachel at Sea Dog!

Posted by in (Team) Rachel & Batten Disease

paintAn 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!

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