Tag: batten disease

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…

rachel

I haven’t blogged in forever and I owe myself an apology.  I need this blog.  For posterity’s sake (my memory is shot) and to get my feelings out.  Feelings. I sound like such a bitch.  Feelings. FML. I texted my landlord in December to see if she had any larger homes for rent and within a few weeks I was starting to move my kids and all of our crap to a new home in Northeast Denver.

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.

Rachel (on the right) is turning 15 on May 18th and I am asking my internet family to send her MUSICAL birthday cards. She is blind and terminally ill because of Juvenile Batten Disease. Rachel Vontungeln 4769 Dover Street Wheat Ridge, CO 80033. Please share and thank you.