Wednesday, August 23, 2017

Whew. It's been a WHILE!

It's amazing how fast time goes.  Sometimes, it feels like a sneaky little thief.  I blink...And its gone.  Chunks of time.  

I'm worried today.  For the past several years, our oldest son has been receiving Social Security Disability.  He has visual issues, due to a Optic Glioma caused by Neurofibromatosis, severe cognitive deficits and also has spinal tumors that cause back pain.  He 'QUALIFIED' for disability...with LESS issues -- 

But today...I have to fight to try to keep his Social Security benefits, because the system thinks that since these issues have remained "stable" --- He's fine...and doesn't need assistance anymore.

Let me tell you how "STABLE" works with Neurofibromatosis....Bailey, my oldest daughter had a "STABLE" brain tumor while ON chemotherapy....3 months later...That tumor DOUBLED in size!

I have a friend, who has a child on disability....This child's vision was COMPLETELY taken from him - while the tumor remained "STABLE"

I get so frustrated with the system....And how this system can tell me my son "no longer has a disability"....God...I wish!

  1. (of an object or structure) not likely to give way or overturn; firmly fixed.

In the world of Neurofibromatosis....Nothing is "stable".  Nothing is "firmly fixed".  Today...I will try to get the system to learn...Try to get the system to see...But in the end - it's up to them.

I know there are those out there who think - if he's stable, he shouldn't be on disability, and that's fine....but there is no way to secure a future for my 19 yr old son.  He can't hold a job that would support himself....And will most likely be living with us, his entire life.

I'm fighting to help give him SOMETHING to rely on....Insurance mostly.  Those of you living in the world of Neurofibromatosis know, that insurance is the most important thing...without it....God -- I can't imagine -

Bailey's chemo treatments...were in the MILLIONS of dollars.

We shall see.  I will update when the system decides


  1. You claimed two of your children have high functioning autism in the past well use that as the main disability qualifier. Did you think about a lawyer?! I got Bill Latour's law firm to help me with my SSDI case.

  2. Kristi - I'm sorry to hear about your current hardship. I'm sure 2017 has been nothing shy of challenging. Sending thoughts and prayers. I had a question on an older post. If you have some time, I can be reached at virgilnci(@) God bless, V

  3. Sadly issues like getting legitimatly disabled people SSI benefits, like your son with NF are yet another thing ignored by the mainstream "disabled rights" organizations. All they focus on is "bullying" and use of the "R" word. And it seems those same organizations think certain disabilities are better than others examples like their obsessive focus on Down's syndrome and wheelchairs ignoring other disabiltiies like NF and blindness. I fought for my SSDI benefits for 2 years and was approved in 2011 with a private lawyer.