→ (Team) Rachel & Batten Disease

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.

rubyrachel

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. lol

I promise to ask for their pictures before the end of the year. ❤️

And that school bus? It was brand sprawling new for Rachel to start school at the beginning of this year!!

audiobook for the blind on usb by library of congress

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 mailed, for free, to blind people all over the United States, yet the “outgoing” slot is too small to fit them.

Are blind people supposed to drive to the post office?

Just a morning WTF moment.

rachel with her audiobooks for the blind

Rachel Vontungeln 15

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. Continue reading→

stc

The Wasabi clan finally pulled together some halloween attire.  I turned myself into a zombie doctor with the PPE that I was given to work with Rachel.  Julie became a kid zombie with a little make-up and Continue reading→

Rachel with Sam on Bike Day 2015

So this is a yearly event at Rachel’s special needs school called “Fletcher Miller.”  The idea is to get all of the kids together, regardless of ability, and have them ride a bike.  I got there and put Rachel on a bike and pulled / walked with her around the track.  I missed this last year (2014) and the principal, Bob (who is Spongebob in the pictures below) was nice enough to email shots of my girl. Continue reading→

rachel_rosie_2

Rachel decided it was time.  She was ready to hold “Rosie” the Tarantula that lives at the Butterfly Pavilion in Westminster, Colorado. They have dozens of Rosies to swap in and out throughout a typical day and this Rosie was presumed to be about 10 years old.   Continue reading→

rachel_15_firstday

My high schooler.  Beautiful just like her Mother.

Rachel goes to Fletcher Miller Special School in Lakewood, Colorado and started a new class this year.  I’m always nervous sending her to new people but in her class this year is another student who is verbal.  Last year, unfortunately, she was the only verbal “kid” in the class.  She, like a typical teenager, would prefer to stay in bed all day.  But I need to work and we both need a break from each other. Continue reading→

rachel_birthday_cards

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. Continue reading→

Please send Rachel a musical birthday card for her 15th birthday

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.

Boston, London and Julie at Hull Gut, Peddocks Island in Hull, MA, March 2015

I’ve been wanting to write this post for months but have had such a hard time coming up with the right words.  This is a problem I never seem to have but it has been so hard for me because I’m too close to the problem.  I’m not sure that makes sense, my head feels crazy every weekend and sometimes I want to sleep it away. Continue reading→

I am pretty sure this video was taken at summer school in 2010.  Massachusetts Basksetball State Championship Coach and Special Education Teacher, Liz Londergan​ took the time to show my blind daughter Rachel how to shoot hoops and Rachel sunk one!

Rachel with Jenni the Art Teacher and Bob the Principal of Fletcher Miller

Last night Rachel and other students at Fletcher Miller School were honored by having their art featured in a show in the Corner Gallery at the Lakewood Cultural Center.  I have a lot of respect for her art teacher, Jenni, as you really have to think outside of the box to teach a blind person to create art beyond finger paints, wikki sticks and tactile stickers.  I’m really proud of both Rachel and her teacher and going to the show was a very sunny moment for me.  I tried to take her picture with her art and her certificate but she, much like her mother, was a bit of a shit about it.  LOL.

We also took a look (those of us that can see) at an artist, Chris Kreig, who had a really cool “BIG” exhibit, I put in a couple of his pieces with Julie posing at the bottom.

Rachel with her art and certificate of awesomeness!

Rachel with her art and certificate of awesomeness!

Rachel with Jenni the Art Teacher and Bob the Principal of Fletcher Miller

Rachel with Jenni the Art Teacher and Bob the Principal of Fletcher Miller

Julie standing in front of some really cool art by Chris Kreig

Julie standing in front of some really cool art by Chris Kreig

batten_disease_rare_disease_day

Thank you to the Beyond Batten Disease Foundation for allowing me the use of their beautiful graphic.  The video on their home page reminds me of Rachel about 5 years ago.  I started sobbing while watching it and it took me 2 hours to recover so I could write this blog entry. Continue reading→

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