“Help Sean Barr’s Battle against ALS”!
Donation protected
Hi everybody this is Sean. I’ve been pondering this for a while now on sharing my battle or current changes.
So as some of you know I was diagnosed with Bulbar-ALS almost 6 years ago, so it’s been a very hard road for me and my family, with all of the mental, physical, and financial struggles. One thing we didn’t expect, is that once you are diagnosed with ALS, the Insurance industry puts you in a box and stops paying for anything that is not ALS related. The reason why I’m reaching out is that the tests and treatments to make my condition manageable have put indescribable financial burdens on my family.
So I’m reaching out to you for love and help us to get through these difficult times I’m sorry to ask at a time that we are all going through difficulties coming out of the pandemic, but anything would help.
To end on a positive note if there is one! dealing with my ALS for the last 6yrs and losing my ability to do things or even have conversations with my kids and wife has absolutely been the most difficult part. I’ve spent every waking moment researching and reading every and all things that are associated with ALS and ALS misdiagnosis. One thing that kept coming up, was Lyme disease. They say Lyme is the ultimate pretender, and the overlap of symptoms is incredible and fit what was happening to my body.
I was tested a few years ago and it came back negative for Lyme, so we took that off the table. Since then, new testing has been created that is more sensitive to picking up Lyme infections, I got tested again, and bingo, I am positive for chronic Lyme (neurolyme). I have been working with an LLMD (lyme literate doctor) to treat me but insurance doesn’t cover any of this, So hoping and praying for you to help me.
Thank you from the bottom of my Heart and I wish you all the best in life and live and love everyday to the fullest!
So as some of you know I was diagnosed with Bulbar-ALS almost 6 years ago, so it’s been a very hard road for me and my family, with all of the mental, physical, and financial struggles. One thing we didn’t expect, is that once you are diagnosed with ALS, the Insurance industry puts you in a box and stops paying for anything that is not ALS related. The reason why I’m reaching out is that the tests and treatments to make my condition manageable have put indescribable financial burdens on my family.
So I’m reaching out to you for love and help us to get through these difficult times I’m sorry to ask at a time that we are all going through difficulties coming out of the pandemic, but anything would help.
To end on a positive note if there is one! dealing with my ALS for the last 6yrs and losing my ability to do things or even have conversations with my kids and wife has absolutely been the most difficult part. I’ve spent every waking moment researching and reading every and all things that are associated with ALS and ALS misdiagnosis. One thing that kept coming up, was Lyme disease. They say Lyme is the ultimate pretender, and the overlap of symptoms is incredible and fit what was happening to my body.
I was tested a few years ago and it came back negative for Lyme, so we took that off the table. Since then, new testing has been created that is more sensitive to picking up Lyme infections, I got tested again, and bingo, I am positive for chronic Lyme (neurolyme). I have been working with an LLMD (lyme literate doctor) to treat me but insurance doesn’t cover any of this, So hoping and praying for you to help me.
Thank you from the bottom of my Heart and I wish you all the best in life and live and love everyday to the fullest!
Organizer and beneficiary
Michael Napoli
Organizer
Petaluma, CA
Sean Barr
Beneficiary