HollyAlonzo – Never Giving Up Hope

Yesterday was May 5. That is a day I will always remember. The day my life was changed.

I had gone to the Emergency Room at the Arkansas Children’s Hospital. They had diagnosed me with Neurofibromatosis type two. They had told me I had a life-threatening brain tumor.

On May 5, 2000 I went in for my first brain surgery. When I was diagnosed, I didn’t know that I would soon be blind.

I never imagined ten years after being diagnosed I would be blind, deaf, physically impaired, no vocal cords, and the countless other issues I have.

But, at least I’m still alive to enjoy what life I have with my family and friends. I have touch, smell, and taste left. I have to have help walking places, but at least I can walk. I can’t speak very loud, but at least I can talk tat all. People can hear me if they hush and pay attention. I am going to look into getting a voice amplifier though. It will save me from having to repeat so much. I get frustrated when people don’t hear me, because I’m talking as loud as I can.

But, in ten years I slowly went down hill. It makes me wonder where I’ll be in another ten years.

Maybe the doctors will figure Neurofibromatosis out and be able to reverse my situation and the next ten years will be climbing up hill. Who knows? I can hope, right?

The National Institute of Health in Bethestha, Maryland is doing a Natural History Study of NF@. The study lasts five years, and they do testing every six months to monitor your NF2 and treat it if needed.

I was accepted into the study last week. For now, I no longer have to worry about battling the health care system trying to get the treatment I need. The NIH have some of the top experts in NF2. During the study, if I need any surgeries, they will be done there at the NIH for FREE. They do no do the ABI placements, so this wouldn’t have helped me get the ABI I needed.

It looks like I go for my first visit in June. I’m very excited about this. I will have top-notch care (like I did at HEI) and will be taken care of for a few years. Now I can RELAX. I was stressing out over not having a doctor for my NF other than Dr. Friedman and his team, but since it’s charity I don’t want to wear out my welcome, ya know?

Thanks everyone for you support! Things are looking up a bit for me medically, I think. Let’s hope it continues.