Elisa is now 23, hard to believe how time has just gone by. Her life is miserable to me but it’s hard to say how she feels. She can no longer express herself unless it’s pain from a fall or tears from depression. We spend our days watching movies, the same ones over and over because she doesn’t retain memories very well anymore. I am her life, well her immediate family is. We don’t see visitors very often, only on holidays, although my brother and sister come by a few times a week. Her brother Will and his wife Angelique try to spend as much time as possible with her. I wish I could take her out shopping or to lunch but it is almost impossible for me to transport her by myself. We try to have fun here at the house and when something goes wrong we try to laugh about it, what else can you do?

We have been doing Gentamicin treatments for 2 years now. I can’t say if it helps or not. We have no comparison. She is a lot better off after almost 10 years than most. She can sit up and eat if I help her. She uses the bathroom with my help. She does talk but it takes forever for her to say anything and when she does she repeats, over and over. It is very hard to watch her and realize she never went on a first date or has been kissed. She watches romance movies and you can just see it in her eyes how she wants to be that girl on the screen.

There isn’t much else to say at this time. We just live day by day, as things become harder I know we will have some tough choices to make for her. For now we will just enjoy what we have.

Tom and Mari Brackin
proud parents of Elisa Brackin

LAFORA’S CHILD

I SIT AND WONDER,
I SIT AND THINK.

MY MIND STILL FUNCTIONS,
THOUGH I CAN NO LONGER SPEAK.

I FEEL SO ALONE,
INSIDE MY HEAD.

MY WORLD CONSISTS OF T.V.,
MY ROOM, MY BED.

I ONCE HAD FRIENDS, WENT OUT AND HAD FUN.

NOW I SIT LONELY, AS IF I AM SHUNNED.

I AM STILL ME, I SHOUT FROM INSIDE!

THOUGH NO ONE HEARS ME, SO ALONE I RESIDE.

LAFORA IS ROTTEN, TERRIBLE, EVIL!
BUT WORSE THAN THE DISEASE, IS WHAT IT DOES TO MY PEOPLE.

YOU SAY YOU LOVE ME, MISS ME AND WILL VISIT.
WORDS ARE EMPTY PROMISES UNLESS YOU ARE VIGILANT.

DO WHAT YOU SAY, SAY WHAT YOU MEAN.
DON’T LOSE ME IN THE WORDS, PLEASE COME CLEAN.

I AM STILL ME, YOU ARE STILL YOU.
IF WE WERE FRIENDS IN THE BEGINNING,

WHY SHOULDN’T THE SAME STILL RING TRUE?

Written by Mari Brackin, Elisa’s mother