HollyAlonzo – Never Giving Up Hope

I knew my hearing was bad, but wow! I didn’t know it was this bad.

On Tuesday, I had a hearing test done. The last hearing test I had was in North Carolina back in the spring.

Then, my hearing was moderate to severe with a 32% speech recognition at 75DB. This was a headache. I couldn’t really understand people. My audiologist told me just to ask people to repeat or rephrase. It worked for the most part.

Now, I have to have everyone finger spell to me or try to write into my palm which I am not good at. Before it was some time’s, but now That is the only way I know what is being said.

I hear them, usually, I just don’t know what was said. Well, the hearing test on Tuesday showed that I have Moderate to profound hearing with absolutely no speech recognition even at the loudest level of 300DB.

Most people, normal people, hear all words perfectly at 30 to 40SB. To think, my hearing used to be perfect.

Even if there is a drug to shrink my tumor, I doubt I will ever get that perfect hearing back. My only chance to hear anything, even more than I do now, is through the ABI.

I had an MRI done a couple of weeks ago, and I had a copy of that sent to Dr. Friedman. I am waiting to hear his opinion on it. Does t he t tumor need to come out now? The doctors at UAMS in Little Rock certainly think so.

Everywhere I turn to try to do events, speaking, book signings, Edward’s playing music, everything is going to cost a lot of money. No places will let us have a discount or donate a few hours to let us try to raise funds. The mall, where I wanted to set up a table, wants to charge $600 a day. I explained the situation and they didn’t care.

It seems all people want is money. I probably wouldn’t even make $600 that day, so I would be losing money. What else can I do? I am not trying to get rich or make money by scamming people. I need surgery, and if it wasn’t for this I would not be trying to get paid off my book or story. I don’t know where to turn to now. I just hope in the very near future someone out there will give me a break.

Technology is great, without it we wouldn’t be able to do half of what we’ve achieved lately. But without it, we are stranded.

We come to rely on technology for everything. I myself use a lot of assistive technology just to make it possible for me to live some what independently.

In order for me to use my computer, I was using a braille display. It was a Focus 40 and I liked it a lot. I got to where I was using it a long with the speech of Jaws for clarification since I am such a slow braille reader.

Now, I am at the point where I can not understand Jaws at all, not even a little. I had to rely on the braille, which isn’t great for me. I began to dread the PC, when before it was one of the things I enjoyed. But, not anymore. Maybe I just don’t have the patients for it. What I do now is read. It might take me forever, but it is something that I am still able to enjoy.

A whole new life can be found in a book. When reading, I’m normal again. So, I don’t care if it takes me forever. I’ll get done when I get done. When I finish this book, I’ll move on to another one because I get bored without a book to pick up and read on occasionally.

I had my husband hook up another braille display for me to use until I can get my Focus fixed. This is a tiny display, but it works. It’s annoying to only be able to read a word or two at a time, but something is better than nothing.

I’ve been MIA on the blog because for a while, I had no way of using the PC. I had my husband check my e-mail and see if there was anything important. When there was, he would sign to me and then I would respond or delete.

Since I’ve been MIA on here so long, I haven’t told you all how the Harvest Festival went.

It was very cold in the morning and late in the evening. I took my book along with me, but I wasn’t able to read it. For some reason it got out of the place and I didn’t have Edward there to fix it. I did not know how to work this. It wasn’t a book in the conventional sort, but a braille note taker with a book loaded in it.

This is my preferred way. I can read books as in volumes, but with electronic braille I don’t have to keep my place and it is easier for me to concentrate on what I am reading.

Because I had no book. I was very bored. I can not see a single thing, or hear anything unless it is right near by and said very loudly. Even then, I don’t know what the sound is. Yes, without touch I am isolated. I have no idea that anything is around me unless someone tells me, but I soon forget because I don’t see or hear it to remind me.

My Mom was there with me, and I would ask her if there were people around or what was happening. It was entertaining for her and others, there were lots of people at the event and constant music on the stage for them to listen to. But, not a lot of interaction with me at my table.

My mom and I were able to collect $260 in book sales and donations that day. It is not a lot, but it is $260 that I didn’t have before.

I have to think of other events to try to set up at, and other ideas for fundraising. Right now, I am at a loss. Places that I try to go for either turn me down or want a fee for me to be there.

Fundraising is not going well for me compared to others. But, maybe someday I’ll catch a break and be able to raise all the money I need for medical expenses.

This coming Saturday October 24, I will be doing another book signing

I will have a table set up at the Harvest Festival in Corning, AR.

The Harvest Festival is an all day event, but I will be there from 9 A.M until 6 P.M

I have books that can be bought from me when I sign it, or if you already have a copy of my book and would like it sign, bring it up to me and I’ll gladly autograph it.

If you can make it to this Fest, and get a signed copy of my book, I would be so happy to see you.

Come on out and brighten my day by showing your support!

Yesterday went well. There wasn’t a crowd, but it wasn’t dead.

I want to thank everyone who made it out. It means a lot! We were able to sell a few more books and have a lot of books on hand right now. I think about 500 or so.

If you would like one be sure to go to the get a book page and you can order one directly from me.

I have set up buy it now buttons since not many people wanted to go through Lulu.com and this should work well.

You may pay with Paypal if you have it, or most major credit cards as well without having to sign up for anything.

Be sure and visit the book page and get yourself a copy of the book and tell others about it.

The day has finally come. Tomorrow is the day that I’ll be doing the book signing at the Library.

Everyone is expecting a lot of people to be there, so I hope it goes well. I’m sure I’ll get to see a lot of people that I haven’t seen in years.

I am very excited about tomorrow. Others may have done this a lot before, but ZI haven’t. This is my first signing!

If you’re in or near Piggott, Come to the Library from 10-noon if you can and show your support.

Here is an article that was published in the local newspaper. You can find the story here They got a few things wrong but it’s good write up anyway.

Alonzo pens book to raise funds for implant
Thursday, September 3, 2009
By The Times News Staff

(Photo)
Holly Alonzo with her son Isaiah and husband Edward.

Holly Alonzo of Piggott has had her share of battles in life, and at age 22 continues to face burdens that would cause many to lose hope. But Alonzo, who
has battled neurofibromatosis-2 since she was five years old, refuses to give up, despite blindness and now the onset of deafness. The young wife and mother
has written her life story in a book in hopes of raising enough money for an auditory brainstem implant that will preserve her ability to communicate.

Her story, “Never Giving Up Hope,” begins when she was five and chronicles the difficulties she experienced prior to being diagnosed with the disease, a
chromosomal defect that causes the growth of benign tumors that impede the central nervous system.

At age 13 doctors at the Arkansas Children’s Hospital found numerous tumors, with the largest compressing Holly’s brainstem, and made the diagnosis. Days
later the mass was removed, but when Holly awoke she was unable to see, “I thought my life was over that day,” she remembered.

But Holly persevered, and despite losing her sight, her balance and enduring countless surgeries tried to live as normal life as possible. More recently
tumors caused her to lose the hearing in one ear, and now the hearing in her other ear is being threatened by yet another tumor.

After being turned down by Medicaid, Holly began to try to raise the $30,000 needed for the implant. And after countless raffles, and collecting numerous
donations, she found that she was only one-fourth of the way to her goal. That’s when Holly decided to write the book she had long considered.

“The ABI is critical for Holly’s communication,” noted neurologist Dr. Rick A. Friedman of the House Clinic in Los Angeles. According to Alonzo, Friedman,
along with neurosurgeon Marc. S. Schwartz, M.D., have offered to do the surgery without charge and the St. Vincent Medical Center has agreed to waive their
charges as well. “I am motivated because of my commitment to helping people in need,” Friedman said of the effort.

Holly, the mother of two-year-old Isaiah, also had other reasons for writing the book, “I wanted to help, educate and inspire others with my story,” she
noted.

The Piggott Public Library will be hosting a book signing by Holly from 10 a.m. to noon Saturday, Sept. 19. Copies of the book also will be available for
purchase at that time. Those wanting more information on the book, or making a donation to the cause, may visit
www.hollyalonzo.com
or may email her at
holly@hollyalonzo.com
Those wanting more information on the book signing may call the Piggott Public Library at 870-598-3666.

Holly Alonzo is a young wife and mother.

Holly, her husband, and son

When she was 13 years old she was blinded by a brain tumor. This tumor nearly took her life. She is very fortunate to still be alive today.

Holly Has been diagnosed with having a rare disease called neurofibromatosis2. This disease causes tumors to grow anywhere along the nervous system, but especially on both right and left hearing and balance nerves.

Holly has already had surgery to remove one of the tumors on her right hearing and balance nerve. The only hearing she has left is on the left side. But that side has a tumor on it as well.

She needs to have this tumor surgically removed as well to prevent this tumor from ending her life. Doing so willleave her completely deaf-blind. The only chance to any hearing at all will be with the auditory brainstem implant.

These implantsare only done in a few locations in the world. Her insurance will not pay for sucha device since it is out of her area. She needs your help if there will ever be any chance for her to hear her little boy as he is growing up. The smallest sound will be so important to her.

If this touches your heart, and you would like to help this young lady out, please donate to help her keep some hearing to be able to continue to hear her son call her mommaand her husband tell her he loves her. Held give Holly hope, by allowing her to hear the world around her.

How To Donate

To donate to Holly’s surgery fund, ou may send a check to:

Holly Alonzo
P.O Box 291
Piggott AR 72454

Or you can donate online by clickng the donate button below.

If you can donate at all, ev en a tiny bit, it would be greatly appreciated. Help this lady get the medical treatment she needs.

Front Cover of the book. Blue skies, white clouds, and a pair of hands letting go on a butterfly.

“Never Giving Up Hope” tells the story of what I have gone through in my life. Normal one day, and blind the next. I tell about the challenges I have faced with my disease, and this blindness.

As a blind person I came to rely on my hearing. But this disease is taking that away from me as well. I tell of the struggles I’ve had as a Deaf-Blind individual.

Only a person’s faith and determination can get them though something like this. I wrote this book to help, educate, an inspire others. Anyone can get through challenges in their life as long as they don’t give up hope.

I need an Auditory Brainstem Implant to give me hearing back. My insurance will not cover this device. By buying a copy of this book, you are supporting my cause. All sales from this book will go to the ABI fund and allow me to hear sounds once again. Buy a copy for yourself or for a friend. Help raise the funds needed for the Auditory Brainstem Implant.

This book makes it easier for those with low vision to read. The font size is 14, and it is on solid white paper for a higher contrast. There is also the e-book for those using screen readers. I am blind myself, so I have made this book accessible to all.

How To Order

You may get a copy of this book a couple of different ways. You may click on the buttons below and pay for the book online , or order by postal mail.

Print copies of the bookare $12.99, and the electronic copy is only $7!

To order a print copy directly from me, you may click the button below.

If you would like an E-Book instead click the following button.

I do have an accessible file for those using screen readers. Just put “accessible” in the instructions to the seller.

Once payment has been received, you will be sent your copy. If you chose to buy an E-Book instead, please allow 24 HRS for the file to be emailed to you as an attachment.

If you want to order by postal mail, please include the following information with your payment.

1. Name
2. Address
3. Which format of the book you would like.
4. E-mail Address (if applicable)
5. Phone Number (if applicable)

If buying a print copy, please include $4.95 to the amount for shipping. This information and your payment may be mailed to:

Holly AlonzoP.O Box 291
Piggott, AR 72454

Buy a book and help raise the funds to get the needed surgery and the implant.

It’s been a while since I have wrritten. I felt completely terible for the past several days.

I finally got around to going to the urgent care because I didn’t know how much more I could deal with. It’s hard being sick and taking care of a baby. I never could go during the day because I couldn’t find a baby sitter, and I didn’t feel like lugginig around a car seat after taking a cab. I could not get a ride from anyone either.

One day when Edward got hom from work we all went. I needed him to go and be my ears, and he also had to take care of the baby since we still could not find anyone to watch Isaiah.

It turns out that the reason I was feeling so terrible is because I have strep throat, and on top of that the flu. My throat did feel like I had swallowed a piece of glass, but I’ve never had strep throat so didn’t even think about that. My muscles ached so bad and I didn’t want to move.

The flu is over now, but the strep throat continues. I have another week of antibiotics to take for that.

My ears heart constantly. There is no ear infection, it just must be part of the strep throat. I thought my hearing was getting worse because of an infection, but I’ve pretty much given up on that theory.

I can hear people talking, but I don’t have a clue what is being said. Even my husband now had to speak directly into my ear. Any farther than that and I can’t understand him. Even when he is talking into my ear I have trouble understanding him. He has to slow his speech down, which he doesn’t always remember to do. Even if he does, sometimes I still don’t understand what he is saying.

Losing my hearing is killing me. Is the re hope? Will I ever be able to get the ABI? When and if I ever do, I’ll still have the 4-10 weeks of total silence after the surgery waiting for the ABI to be turned on, and prayiing that it will work.

Losing a sense is never a fun thing. I’ve already done it, and it looks like I’m about to lose another sense completely. All I will have left is taste, touch, and smell. It is a depressing fact of life for me, and I just have to keep trying to make it the best I can.

I need to finish my book so I can raise more funds. At least, I’m hoping it will make htfundraising easier. This is my only hope at having a bit of hearing and I can’t give up.

I still have to raise funds for the ABI. I haven’t mentioned it on here all that much because I didn’t know the best approach. Some say to just come out and ask for it, but that is not the way I was raised. Even while out I don’t speak until I am spoken to. So I guess the way someone was raised has a heck of a lot to do with this.

I have been trying to think of something to do, make, sell, etc. I need something for people to buy or to give them for donating. The problem is that I can’t think of anything and no one is helping me think. T-shirts is not really a good fund raiser in the U.S. right now because well no one is wanting to spend money unless they have to.

It’s not as urgent to get these funds anymore, the plan is to wait as long as possible to remove this other tumor since it will lleave me absolutely and totally deaf and blind. If I am able to get the implant then, I’ll have to live in a silent dark world with only touch to appreciate for 6 to 8 weeks until I can get the implant turned on. If I am not able to get the implant at that time because of not having the funds, then there is no telling how long I could be in this type of world. That scares me very bad. I have to make sure I have the funds raised by the time I go for that surgery. If it grows, since it’s already big it can’t grow much more and still be safe, it will have to be taken care of right away, then I’ll lose everything I have and do not know how to function total deaf and blind. At least if it continues to go slowly, I adapt each day without even knowing it. So it is important to raise the money for this implant. I don’t want to sound desprat, but in reality I am. If I don’t get this ABI, life won’t even be worth anything anymore. I’ll lose every bit of independence, communication because people either don’t know sign or think it takes too long. Sighted deaf people have an advantage here, they can write on a notebook or have others do it. That won’t do me any good if I can’t see what they are writing.

I just need help trying to figure out how to raise these remaining funds, arorund $20,000 dollars. If you have any ideas or suggestions please let me know. You can e-mail me, or leave a comment. Thank you everyone for your support.