→ (Team) Rachel & Batten Disease

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 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→


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→


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


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→


To put it as directly as possible: my oldest daughter is dying, I’m a single Mom and life is a bit tough at present.

I realized that I was due for a magnificent stress relief yesterday. I was at the bus stop putting my daughter on her bus with my Mother at my side. It was not a regular moment, my Mom was in from Boston visiting myself and my children. I had let my daughter stay home all week from school so she could spend every waking moment within fingers’ reach of my Mom. Continue reading→

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Having a blind child makes you look at life a different way.  Blindness without anything else, like Batten disease, causes you to look at life in a profoundly different way.  Last night I saw a clip about a cat named “Honeybee” who is from Fiji and was adopted.  Her human takes her on hikes with a harness and leash and wears her in a pouch on the way down from the hike.  Absolutely beautiful, simple video and worth a watch:

rachel at give kids with world with minnie and mickey

Julie pulled this video up over the weekend of Rachel and Julie doing the weather. I cannot believe how much she has declined. It was a huge kick in the gut watching this.  Life is so fucking unfair, I just can’t stand it sometimes.


The merry go round that is my life seems to be spinning faster these days. John moved to Denver on Friday and is staying with us for 10 days. It is pretty interesting to have him in my home after so many months apart and so many bad feelings between us. This is for the kids and hopefully we will be able to be somewhat nice to each other for them. Continue reading→


This past weekend I brought the 4 kids plus their father who just drove out here from Boston to the Breakfast with Santa put on by Rachel’s Special needs school (Fletcher Miller in Lakewood, Colorado). It was a great time, huge value for the money and a nice, inclusive environment for kids with special needs and their families.

Here are some pictures I took of my kiddos and a few of people that love Rachel (Hi Kristin and Becca).



Julie, Christmas at Fletcher Miller Breakfast with Santa 2014






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