Book by a deaf/blind woman

[Cataboo]

I'm not sure this is appropriate for this forum & forgive me if it isn't, but I've been reading posts by a lady named Holly Alonza on a newsgroup I'm on and it's just a bit heartbreaking. She's got a disease called neurofibromatosis type 2. It's basically a genetic disease that causes the lining of the nerves to grow into tumors in the central nervous system. These tumors eventually just strangle the nerves. There are no drugs as of yet that help, the treatment is surgery - but given that the tumors are the linings of the nerve, you often can't remove the tumors without losing functions in the nerves. It's usually characterized by deafness because both auditory nerves grow tumors, balance problems, and basically progressive loss of functions as tumors grow over time.

Holly's been blind for several years, and has been losing her hearing over the last few months. She has a young child, I think he's 2 or 3. So I read her posts about the difficulties in taking care of her child, or communicating with the world, or her husband who doesn't want to take the time to sign into her hand, because it's a difficult adjustment for him as well... She just in the last month decided to move back to live near her parents, and told her husband to come with or not, but she couldn't manage day to day without more help and where they were living was too mountainous for her balance issues.

But anyways, here's the info about the book she wrote. The proceeds of the book are for fundraising for her to get an auditory brainstem implant - which is basically like the cochlear implant, but they implant electrodes into the auditory nucleus of the brain since after the tumor is removed, NF2 patients have no auditory nerves. Her email at the end of this blurb is her paypal account if anyone wants to contribute directly:

Hi All,

I have written and published a book. It will tell about my life from
the time I was diagnosed with NF2 until now. Shows what all I've had to
deal with and some of what is to come.

The print copy is 5.5x8.5 and it has 14 point fount on solid white paper
so that it is easier to read for people with low vision. For those
Blind or severely low vision that need it, there is also an e-book
available. The print copy is $12.99, and the E-Book is $9.99. If you
would like you order a copy, visit
http://stores.lulu.com/hollyalonzo
This online store accepts most major credit cards and paypal as well. If
you would like to contact me for any reason you can email me at
mommaholly@gmail. com

Thank you all for your time and support.

Holly Alonzo

[Cataboo]

her website:
http://hollyalonzo.com/

[Tuckervill]

Wow, poor gal. Thanks for helping her out by sharing her story.

Karen

[Zen]

Wow.
I know health issues are hard to deal with but some husband. It sounds like she has given up on him but she hasn't given up on herself. I like that.

i definitely will buy a copy of her book.

[Cataboo]

Well, he ended up moving with her. I have no idea how long they have been married - but it must be frustrating having to watch your blind wife go deaf as well and then the challenges that ends up entailing... and just realizing that the rest of his life is going to be taking care of her and the child... Not quite what people are usually signing up for when they get married. Frustration on all parts, probably.

I figured she really wasn't going to get too many buyers on the forum she was on, and there might be a few sympathetic people here. She prints everything out in braille to read stuff over the internet... it must just be slow & frustrating.

[badger]

stories like hers sure makes you grateful for your health and to not take it for granted.