Hi, my name is Holly Alonzo. I am 21 years old and have a genetic condition called Neurofibromatosis Type 2 (NF2), which is tumors on the spine and cranial nerves.
When I was diagnosed, the doctors found a tumor wrapped around my brain stem. This tumor had to be removed, and it was unknown whether I would survive this risky surgery. I did, but I woke up blind – in complete darkness.
NF2 is once again interfering with my life, and is now threatening my hearing. I have already lost the hearing in one ear due to the bilateral tumors on my hearing nerves. The tumor on my good ear is now growing and something has to be done soon.
I am looking to get an ABI (auditory brain stem implant). The implant will provide me with some auditory stimulation so I won’t have to risk being completely blind AND deaf. Unfortunately, the procedures to get the implant are only done at select hospitals. These hospitals do not accept my insurance (Medicaid) and this is why I am asking you for your support.
I am a young mother and wife and need this procedure done ASAP.I would very much appreciate any help you can provide. Every dollar counts.
by Anne, on 01.25.08 @ 11:49 pm
Hey, Holly!
My name is Anne. I also have NF2. I suppose that you know Amber (FL). She created cause link on facebook to this blog site, so thats how I found it. Anyways, I hope that this works out for you. I have also had surgeries at HEI in Cali. I became fully deaf last April, and that is when I got my ABI. It helps a good bit, however its really not same as normal hearing.
NEVER GIVE UP! CURE NF2!
In my prayers.
-Anne
by Granny, on 01.28.08 @ 10:54 am
Hi Holly.
My Canadian online friend Carin asked me if I knew of anyone you could talk to in Arkansas. I left there when David Pryor was Governor so any contacts I may have had are out of date.
I do have some online friends around Jonesboro (where I lived in the 70’s).
Would you like me to ask them if there’s anything they know that you haven’t tried?
Some other time we can rant together about the health care (or lack of it) in this country.
Best
Ann (aka granny)
Merced, CA