Tag: batten disease

rachel with batten disease starting 10th grade in denver

Rachel started 10th grade this week and is having a great time. She has a new teacher named Ms. Nicole and 3 bus drivers and aids! She is doing great and enjoying being back to school and I am having a bit of a break and Rachel having a break from me. Her walking is quite impossible, watching her fall apart has been killing me.  It’s emotionally hard, physically hard on me and on Rachel but her appetite is great…

Cure in the Nick of Time
jeep lift

Look no further.  They exist and are made by a company called Access Unlimited in New York. Now I have to win the lottery or sell a kidney.  I don’t think organ sales are legal? Here is a link to the pdf quote I got to have this made for our Jeep to suit Rachel. $6500 Not being able to do the things we used to do and go the places we used to be able to go is taking…

mail2

In many places here in Denver we have community mailboxes. I like to call them mailbox trees (Rachel is photographed near one of the trees near our house). Within these plastic boxes, (yellow and blue) are small USB books on tape provided to her by the library of Congress. Audio books. Books on tape. They come in the mail, for free, and this library has extensive content for all ages. So imagine how ironic it is that these books are…

feel_better_friend

For Rachel’s Birthday, my mother requested a “Feel Better Friend” through their website and organization based in Olathe, Kansas.  Here is Rachel with her friend who was hand made to look like Rachel.  So cool! Rachel turned 16 last week was diagnosed in 2009 with Juvenile Batten Disease, a very rare and progression brain disease which has caused her blindness, cognitive and speech loss as well as worsening memory and swallowing issues.

ruby

  I wanted to get pictures of her driver, Ruby and bus monitor, Sandra, but I didn’t have the nerve. Ruby is shy and I’ve been working on her since January to talk and it’s been working! It’s was probably torture for her, the beginning, but I believe I’m tolerated now. She’s sweet as pie and puts up with my crazy. smile emoticon. Her husband is a huge Red Sox fan so I knew she needed me as her friend…