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Monday, January 30, 2017

grief

Grief

NF2 is a terrible disease
Holly has NF2
Her head is full of tumors

NF2 is a killer
Holly is end-stage
She will live forever

On January 22nd, I was reading my Facebook newsfeed when I came
across an odd message. Actually, it was two, because the first
person shared someone else's post.

It was a message I've seen in one form or another, posted by
Holly herself, the kind that drips with grief.

"Damn! Another one gone from NF2"

Not a funny message, but I laughed. The way the woman tagged in
Holly Alonzo, it looked as if Holly was the one who died. Ooops!

The second post was apparently written by Holly Alonzo.

"RIP sis"

What? Holly's sister died? She didn't have NF2. It made no sense.
I'm supposed to be intelligent, but the pieces wouldn't come
together, a puzzle that didn't want to be solved.

No no no no no no

The tears were falling as I read Holly's timeline.

"Goodbye Holly, I will always love you"

"You are in a better place now, no more pain"

"God has called his angel back to Heave"

No no no no no no

Holly has NF2
She is my friend
Holly is invincible

Holly's head is full of tumors
She could die
What about her son?

We are both fully deaf and blind with neuro-related issues. I
have PHARC. People don't die from PHARC. Holly has NF2. People
with NF2 might die in their 20's or 30's. I'm 43. Holly turned 30
on January 5th. I have a son named Joseph, age 15. Holly has a
son named Isaiah, age 9. Mommies don't die.

Neurofibromatosis type 2

Can you say it? Can you spell it? If so, I'm sorry for you.

noncancerous tumors throughout the nervous system vestibular
schwannomas benign, slow-growing tumors changes in vision
changes in sensation numbness weakness fluid buildup in the
brain deafness severe balance problems facial nerve
paralysis spinal cord compression swallowing difficulties
eye function complications Autosomal dominant disorders

Neurofibromatosis type 2

Can you say it? Can you spell it? If so, I'm sorry for you.

As long as the tumors can be removed, a person with NF2 is
not considered in terminal danger.

Holly had surgeries to remove tumors
She had many surgeries
Holly almost died in surgery many times

Holly's head is full of tumors
No more room for tumor growth
Holly is end-stage

She will die.

No, she won't die.

Mommies don't die.

Friends don't die.

Holly is dead.

Please help Holly's family. Edward is blind, and Isaiah is only 9
years old. You can make a donation at any Regions bank

In lieu of flowers, memorial donations can be made to the
Memorial Fund set up for Holly Gail Alonzo at Regions Bank to
help her husband and young son.

Angie C. Orlando
January 2017

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