After being diagnosed with Neurofibromatosis in 2007, I quickly had each of my 6 kids checked out and screened. 3 of the 6 of them were diagnosed shortly after.
Seeing what my older brother Mike went through, in regards to NF, we made the decision to apply for Social Security Disability. It was a long- semi-drawn out process, but worth it, to make sure I was securing their health insurance.
All 3 were approved. Rachel, even qualifying for a Make-A-Wish, due to diminishing vision.
We went a few years, with few NF related complications...Which is GREAT....But in the eyes of the government, it raised flags.
For those of you who understand the world of Neurofibromatosis...this is our life, right...? Sometimes we are okay....Sometimes we aren't. And sometimes....we simply get by.
We were sent to "specialists" to determine if Rachel still qualified as 'disabled'. She had a simple and quick Psych Eval, which was given by some Government-sent 20 yr old..who spent 1/2 hour with Rachel and deemed her "cured of her disability".
No seriously..that's basically what the letter said.
.CURED??? If only, right?!
Keep in mind, Rachel STILL has vision impairments....At the time of testing, her results were not better...Not worse. Simply "STABLE"....
But again....Those who understand NF know that STABLE is temporary. STABLE just means, we hold our breath, until the next scan...Until the next complication.
After the letter....I sent in the form to appeal...and got a fast response that the decision was "FINAL"...and to go through further appeals, I'd need a lawyer. *sigh*
So, we let it go.
I went back to work, and we accepted the decision.
Fast forward to about 6 months ago...
Due for her 'every 6 month' MRI, Rachel got some bad news. An NF-related tumor had invaded her Corpus Callosum. A tumor JUST like her big sisters. Inoperable...and required Rachel's big sis, to go through 2 yrs of chemotherapy.
CURED? Not by a long shot.
So now what...? After meeting with some people who are knowledgeable with the application process for Social Security, we were encouraged to "reapply".
So we did...And now we hold our breath for the determination.
During this process...We have had to go through a few RE DETERMINATIONS for the other kids as well. We are currently going through a re determination for Braden...My 19 yr old son...who has also remained stable.
He's had a Neuropsych evaluation....A medical exam...But ultimately...He could also be denied any further benefits, and be labeled as "cured"....
What do you do...? It has been an exhausting process....But we continue to endure it, because I know that it is the best thing for the kids.
If you are afraid of the process of applying for disability, don't be. Take a breath and just do it.
I am here to offer any support I can....We are all in this together after all.
Don't Give Up!