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August 27, 2019  •  Leave a Comment

Hello Everyone 

 

 

 

 

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Some of you maybe wounding 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 are red and big. But I was thinking it just from a bug or something and at night I had a hard time falling asleep but in the day time, I would just fall asleep a lot sitting up. For a little while, I would just sleep in a chair.
 

One day my feet are still red and big I had pain in my chest. My mom took me into the ER they took me right away I had a virus. And my oxygen levels were below 80. The virus went out of my feet but I had a bigger problem why am I not sleeping in bed and I would just fall asleep at random. They took a chest X-ray saw I had a tumor by 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 didn’t figure out yet what is the case of 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

I am In a very tight situation because I have no income coming in. For the last two years, it seems like.  Every dollar counts for me because I have no income, no way of supporting myself.

 

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

Bart

 


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