Tag: batten disease

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 its toll on me and the kids. We have the van which was generously donated by our friends, family and wonderful strangers through GoFundMe but it’s 20 years old and not reliable enough to go long distances.

Does anyone out there have one of these? What do you think?

www.accessunlimited.com

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 trying to mail her books on tape for the blind

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.

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.

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 “2016 is here and so are we” »

Time is a funny little concept that drives so much of our actions, interactions and stress.  I’ve signed onto my blog tonight to share a picture of my oldest daughter whose hourglass is running far too quickly.  I’m turning 37 on Monday and I can’t remember much of my life since getting my driver’s license over 20 years ago.

I’ve done a lot in my 37 years.   I’ve made my parents proud and I’ve made them feel beyond disappointed.  Worse than that are the moments in my life I’ve made myself disappointed.  You relive them over and over and over.

I never finished this blog entry that I wrote two years ago, almost to the day.

My daughter’s hourglass ran out.  I’m still here, fighting to live every single day.

Blog entry completed 8/23/17.

I put my three younger children into public school for the last 7 weeks of school as I have been taking a “Nursing Assistant” course for Rachel.  Both school and the course ended on the same day and I’m catching up on work.  I need to apply for and pass the state exam, hopefully I will get an appointment quickly. Continue reading “School is out for the summer” »

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 “And the birthday cards for Rachel came flooding in” »

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 “Dreading the weekends” »

Nantasket Beach in Hull Massachusetts

We’ve been in Boston (well, Hull Massachusetts overlooking Nantasket Beach) since Sunday and have seen so many people we love and miss.  Friends and family.  People who have seen Rachel decline since 2009 and were able to hide their sadness after seeing her decline of 9 months (since we moved) better than I expected.  I have only cried once since being here, maybe twice.  Not bad, all things considered. Continue reading “Hull, Massachusetts trip during Easter 2015” »

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 “Grief Released” »

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 “December 8th, 2014” »

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