Hello Everyone 

Click on the banner for more info

Some of you may be wondering why I stopped posting new pictures or updates.

Let me fill you in on what's been happening. In the Summer of 2018, I noticed my legs were red and big. But I thought it was just from a bug or something and at night I had a hard time falling asleep but in the daytime, I would just fall asleep a lot sitting up. For a little while, I would just sleep in a chair.
 

One day my feet were still red and big I had pain in my chest. My mom took me to the ER they took me right away. And my oxygen levels were below 80. I had a bigger problem why am I not sleeping in bed I would just fall asleep at random. They took a chest X-ray and saw I had a tumor in my lungs and my spine was pressing against my lungs. The next step is to get surgery to do a C1-C2 Complex Fusion. Which they put a plate with rods in my skull going down my spine into my old rods from 1999 surgery. Not only that but I have sleep apnea now.

In November 2018 the surgery took place this surgery was the worst one of them all. I had to yet again learn how to walk. But now I am no longer able to turn my head around at all just in one spot. It is so hard getting used to it when people talk to me I have to turn my whole body to look at them. I sleep on my left side with a CPAP mask on and my left hand is still not back to normal. Which the doctors haven’t figure out yet what the case that.  It’s 2019 seeing more and more new doctors for my NF1. I was told that they have a new medication to stop the tumors for getting big just waiting on more info on that. My driving is no longer the same because I can’t turn my head to see if I have a car coming my way. My body got so weak to the point I can't even hold my camera anymore. I have a gofundme account if you would like to support

2024 Update

Well its 2024 and still nothing got better at all. I no longer can walk safely

 without a walker or wheelchair. My left side of the body doesn't work well. I stopped driving I believe in late 2022 I didn't feel safe to drive. The hardware in my skull came loose and I am scared of doing the surgery to fix it. I no longer do photography I am focused on editing, doing photo restorations, and AI. Recently I did some CT scans for my body some of the results are stable. And some they found changes. But yes, it is not going so well. I'm trying not to focus on the bad stuff. So if anybody sees this message me let's chat.

From the bottom of my heart, I thank you very much for all the help,

Bart