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Can you help my mom?

This post has been marinating for a while.. a bit too long actually and now that I've finally decided to talk about it on the blog, I'm almost embarrassed for waiting too long.

This is my mom:
Her name is Patti and she lives outside of Chicago.  Five years ago she was diagnosed with Alexander's Disease, which is a rare degenerative neurological disorder that has robbed her of ability to move.  It is a terrible, slow moving disorder where the body slowly eats away at the lining of the spinal cord, stopping signals from the brain from being able to get to the rest of the body. 
I don't understand much more about the details, but I do know that for the last 3 years my mom has been confined to her bed or her motorized wheel chair, and has been completely dependant on others to provide all of her basic needs.   For the last 3 years, my dad, sister Lauren, and mom's sisters have taken turns spending the night with mom every night because the family can not afford an overnight caregiver.  Someone gets her into bed and then sleeps on the couch in my grandmother's family room, waking every 2 or 3 hours to reposition mom so she doesn't get bedsores.  In the morning (5 days a week), she has a caregiver come and assist her with bathing, dressing, and getting out of bed and back into the chair.  The caregiver usually makes breakfast and leaves after 4 hours or so. 
Mom can not be left alone, so the family takes shifts to spend part of the day with her, and at night, it's the same routine.
I won't try to describe the guilt I feel at not being closer, not being able to pitch in or offer any help myself.  This post is about mom, not me.  But now it is my turn to do something.. to get the word out.

The family has organized a fundraising benefit to be held in Chicago on October 28th. 

There will be a raffle and a silent auction, where I am donating this quilt:

Because of my work schedule this semester, I will not be able to go to the actual benefit, but if you are anywhere near the south side of Chicago and are interested in dropping by, I encourage you to go.  There will be many nice raffle prizes and the silent auction will be full of valuable items to bid on.  If you would still like to help but can not make it to Chicago that afternoon, I ask that you please visit the fundraiser's website where there is information on how to make direct donations, both electronically (Paypal or credit card) and by check. 

My family and I thank you for any support you can give at this time.  Sometimes life isn't easy, and nobody's perfect, but if we stay positive, work together, and do what we can, we can make it through.


  1. Your mom is so fortunate to have so many willing and loving caregivers. Prayers. I hope the fundraiser is a tremendous success.

  2. Dear Jessica, I'm so sorry to hear about your mom. She looks so sweet and I feel very sad she's not well and can't play with her grandson. I do hope the fundraiser goes well and you get all the help needed. You are in my thoughts. x Teje

  3. Jessica, I'm so glad you asked. People do step up when they know of the needs. I'm off to the website right now.

  4. Jessica, My thoughts and prayers are with you and your family. I went to the donation site to make a donation. I hope your fund raiser is a great success. It is so difficult for a family to provide round the clock care for loved ones. I did that with my mom and I know what you are going through.
    hugs from south Louisiana

  5. My Aunt Marelyn had this same disease. My heart goes out to you and your family. She passed in 1996. Her husband John was a rock. On a side note he is my Uncle who married my Aunt... (Moms sister Marelyn and brother George passed, their respective spouses my Uncle George married my Aunt Joyce!)

  6. I am writing a check for this most deserving project. Wish I could do more. . .

  7. Jessica - I wish I could go to this, but I'm taking the GRE the next day and I know I will be cramming like crazy (especially since that's basically my entire study plan). I will help spread the word to people here in Chicago, though. Thank you for sharing this.


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