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.

[Cataboo]

Bump.

Alright, it's basically time for Holly's tumor to come out - she's been in a motorized wheelchair because of how compressed her brainstem is from the tumor and how badly her balance has deteriorated. The tumor is basically the lining of her auditory nerve, so it can't be removed without cutting out her nerve and leaving her deaf permanently (she's already blind)

One of the few hospitals that can do the surgery and implant the auditory brainstem implant is House Ear institute/St. Vincent medical center in Los Angeles. The implant is like the cochlear implant, but since they will have to remove her auditory nerve to remove her tumor, they put the electrodes in the auditory nucleus of the brain. It's a smaller area, so they can't put as many electrodes in as they manage to put in the cochlear implant.

She is on disability and has Arkansas medicare, and they basically have refused to pay for the surgery (I don't know if it has to do with it being in Los Angeles or they don't cover the brainstem implant) and there are not doctors in Arkansas that do the implant.

She has gotten the neurosurgeons and doctors at House Ear Institute to agree to do the surgery pro bono and to do all the followup tuning & care of her implant. She has gotten St. Vincent Medical Center to agree to give her the hospitalization for free. However, she needed $30,000 to pay Cochlear Corporation for the brainstem implant & processor. Another patient with the same disease as her whose brainstem implant did not work out, is donating his $8,000 processor to her, so she needs $22,000 for the implant and however much for travel to Los Angeles for her & her family for the surgery (she won't be able to fly for at least 2 weeks afterwards)

She's managed to raise about $10,000 with the book, I think... but she doesn't really have any longer to wait because with the amount of brainstem compression she has, she can't afford to let the tumor get any larger.

So it's just a few days before the New Year, and if any of you need a charity to donate to for your taxes for this year, I'm not sure there's many more worthy causes.

The hospital has set up a tax deductible charity for her, so you will get a receipt, etc. They have her scheduled for surgery for January 11th, if she can manage to get the money in time.

Address for the donations:

St Vincent Medical Center
Attn: Mary Dory, Director of Revenue Cycle
2131 West 3rd Street
Los Angeles, CA 90057

Checks/Money Order Payable to:

St Vincent Medical Center
List: Donation to Holly Alonzo
DOS: January, 2010