Help Jamie Berry Live ALIVE, with Late-Stage ALS

Enjoy the life you are living, be content, find your fun, get crazy… and ALWAYS HAVE FUN. Remember, things could be WAY worse

, October 18th, marked 36 months of living with ALS. (27 months since receiving the 3rd opinion/ diagnosis/ telling everyone.) I was hesitant to deliver such bad news to my family and friends, but in the end, I am glad that I did. In times of crisis, we need our people.

A good example–Heather & Nancy immediately put together a GoFundMe, on my behalf. I was not thinking about finances… I was thinking about dying. Nothing else.… so it was fantastically shocking to have this massive tidal wave of
Love and support headed our way. The messages, emails, hand-written cards, and the calls, got us through some very dark days. Your generosity gave us peace of mind… lifted financial burden, and gave us the most valuable thing of all: TIME TOGETHER.

That's all that we want… more time together.

In total, we received $159,403 after GFM tips and fees. $130,600 in the first year (12 months) of the fundraiser and $28,803 during the second year (13 months).

We are humbled.

We are also extremely grateful…because what you are about to read is accurate.

The average annual cost per ALS patient in the United States is estimated to be $143,000. incur an average of $92,000 in direct costs and $51,000 in indirect costs. A 2014 study: The Financial Cost of Amyotrophic Sclerosis –sponsored by The American ALS Association. https://www.americanlifefund.com/als-treatment-costs/

Taking into account the calculation of inflation from 2014 to 2022, the average annual cost per ALS patient in the United States is estimated to be $179,971.

Those are the numbers… the astronomically huge, slightly disgusting amount of cash that a terminally ill, paralyzed patient is supposed to come up with, out of pocket, every year? To survive? How is that even possible? How is that even OK?? It is not OK.… it is fucking wrong.

I was athletic, extremely active, a hard working, take care of business wife and an always present at school Mommy. That has all been taken from me. I cannot do one single thing without help. Somebody has to feed me, brush my hair, brush my teeth, give me a shower, get me dressed… the list is never ending. I am on 24/7 life-support and require 24/7 care. Jason wants to be with me as much as possible… but it's tough.

We are Bandit Excavation Inc. and we are JasonandJamie… 27 years & still so happy to be together. Unfortunately,"happy" isn’t enough to sustain "reality". Our"Happy reality" is our beautiful daughter… and her super bright future. She deserves all of the joy and warmth of the sun…and the sparkle, from every star, lighting her path.

On February 6 2022, my pulmonologist gave me 3 to 6 months to live… so the way I see it, I am kicking ass.… or, am I living on borrowed time? Either way, it is what it is. There it is there. So , I will continue to fight the good fight, be kind and positive (i have been struggling)…, live-alive, and appreciate every single treasured second of every minute that has been gifted to me.

Thank you for all that you have done for us & thank you for giving us the gift of TIME.
Jamie


  • Shannon Smith 
    • $100 
    • 26 d
  • Puneet Behl 
    • $20 
    • 28 d
  • Anonymous 
    • $25 
    • 28 d
  • Anonymous 
    • $20 
    • 1 mo
  • Joey Branzuela 
    • $250 
    • 1 mo
See all

Organizer

Jamie Rose Berry 
Organizer
San Jose, CA

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