HollyAlonzo – Never Giving Up Hope

Alonzo Family Photo December 2007

My name is Holly Alonzo. I am a totally blind wife and mother with neurofibromatosis type 2. I’m sure you’re asking, what the heck is that and how do I
say it? Yeah, I know the feeling. I was the same way when they told me that is what I have.

Neurofibromatosis type 2 (NF2) is a disease where you have tumors on spine and cranial nerves. I believe some people have them on other nerves as well,
but mine are just on brain and spine. The big diagnosis sign for NF2 for most people is the bilateral vistibular schwannomas, which are also called acoustic neuromas, which is basically a tumor on each
hearing nerve (right and left).

When I was 13 years old I was diagnosed with this disease when my parents took me to the emergency room for losing balance, seeing spots, and having headaches.
There was a massive tumor wrapped around my brainstem. Luckily for me, it was benign, but it was still really huge and I didn’t have much longer to live
with that thing in there. So 2 days later I had surgery to remove it. I woke up from surgery blind. I could see a little bit, but not really well enough
to tell what anything was. Was mostly a blob of color. 2 months later I had a tumor removed from my optic nerve to hopefully get some vision back. Even if I didn’t, the tumor still needed to come out. That surgery left me completely blind. No color or anything…total darkness.

At first I was really angry and depressed that I could no longer see. Over time I started connecting with more blind people and learning how to do things
with no vision. Now I’m totally adjusted. Sure I’d love to have my sight back, and there are times when I wish I could drive instead of paying a cab, but otherwise I dont’ care about being blind.

I lost the hearing in my right ear right before I lost my sight because of one of these vistibular schwannomas even though it was very small then.
Now the hearing in my left ear is starting to go. The odd thing about it all? The tumor on the left is twice the size of the tumor on the right but yet
I can still hear in it…even if it isn’t the best.

So I’m praying a lot about this, I don’t want to be completely blind and deaf, one or the other but not both. There is an implant I can get that will allow me to have some hearing. It won’t be the same as normal hearing, but it’ll be better than nothing at all. So visit the donate page to learn more about this and keep reading my blog to learn about my progress on trying to get this implant.

In 2005 I married a wonderful man. We met online and met in person and everything worked out great. we now have a little boy that is almost 2, and keeps us busy. My husband is blind and my son is sighted. Edward, my husband, has been blind since birth.

If you want to contact me you can do so
bye clicking here
oor keep reading the blog for updates on doctors, the family, etc. God bless you all!