Tag: batten disease

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.

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.

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.

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.

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.

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