Batten Disease Awareness

[Heather]

Last week, I was signed up to participate in the cleanup run, but had to change my RSVP to a no, due to plans changing with out-of-town friends. These friends used to live in Colorado Springs, but moved back to Massachusetts a few years ago. A mom (Kat), and four kids (Rachel, Julie, London, and Boston. John, the husband, stayed home to run the family computer business). The eldest daughter, Rachel, is 12. She suffers from Juvenile Batten Disease. This disease is horrible, and always fatal. There is very little awareness and support. Here is a bit of information: Juvenile Batten Disease | BDFA This is my friend's website, specifically the road trip page: Team Rachel - - Raising money to cure Juvenile Batten Disease

Rachel was a normal, beautiful, outgoing girl when I last spent time with her here in Colorado. Here is Rachel's info: Team Rachel - - Raising money to cure Juvenile Batten Disease Now, she is completely blind, and has significant difficulty walking due to impaired balance. At home in MA, she uses a wheelchair most of the time. Her cognitive function is clearly very declined. She is at the mental function at best, at half her age. She is extremely loving, huggy, and sweet. It was a wonderful couple hours that we spent with them on Saturday, for brunch. They are all coming up tomorrow night to meet and hang out with our zoo. Kat said Rachel will love our 80 pound big-boned Boxer mix jumping on her and licking (she very much likes physical sensory input). She's also going to handle our four snakes, and leopard geckos. We're sending her home with our stoutest leopard gecko.

Anyway, I had mentioned this to Admin Chris in a PM earlier today, and he suggested that I should feel free to share on the forum (thank you, Chris!) - so in the interest in raising awareness, and sharing what I was up to on Saturday and why I had to bow out, here it is. Thanks so much for reading, and especially thanks if you take the time to investigate any of the links and learn a bit about this horrible disease.

[Squshiee1]

Great post heather! My prayers go out to Rachel and her family. I haven't taken the bracelet off since you gave it to me.

[Java]

that's awful, I'm so sorry for all involved.

[glacierpaul]

Brody previously posted:

[Jackie]

Thanks Heather. I had never heard of this before. It is devistating and I hope the best for Rachel and her family. I just made a contribution in hopes it can help a little. I can think of a few more things to add to her bucket list that I might be able to help with. Let me know if Disney World sounds like a cool thing to do. (Maybe she has already been there).

[Tom]

Thanks for educating me.

[Heather]

So cool, Jackie, thanks! I will mention this tonight - and you are more than welcome to come by, too! They'll be at the house at 6.

[Cr33p3r]

Thank you Heather for posting this, I too have never heard of this disease and looked it up online since at work I cannot view the links. Best wishes for the whole family and our prayers go out to them too!