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Parent Diary

 

Meet the Children of
Chelsea’s Hope

 

In Memoriam

“Those we have held in our arms for a little while, we hold in our hearts forever.”

Elisa Brackin

Elisa was born October 7, 1988. She was a normal, happy healthy child. She excelled at school and was always a “little Sweetheart.”

In March of 2003 we were on an all-girl cruise in Mexico. While on an off-board excursion, Elisa had her first seizure. I did not know what was going on! We thought maybe something may have stung her. She was rushed to the hospital in Puerta Vallarta, checked-out, given some anti-seizure meds., and we finished our cruise.

When we returned home we went to a neurologist, had an EEG, and all the other tests done. It was determined she had epilepsy and that anti-seizure drugs would let her live a pretty normal life.

Well for the next three years everything was fairly O.K. Elisa graduated from High School, rode her horse, swam, rode her quad and even held a job and started college. But we did notice a big change during her Senior year of high School. Her grades dropped, she was tired all the time, she became clumsy and she got lost or distracted easily. When she got her license she was terrible driver. We thought it was just her, but it turns out she was having absence seizures all the time! Needless to say, she does not drive anymore.

In 2006-2007 we started see a new neurologist, Dr. Ronald Bailey. We did more tests, different drugs etc. Dr. Bailey referred us to Dr. Kim at UC Irvine. We did the weeklong EEG test, and while we were there Dr. Virginia Kimonis, a geneticist, did some tests. She found the “Lafora,” but we still did not understand what we were dealing with. No one really told us what to do or what to expect. We have been to Stanford, UCI, and our latest journey took us to UCLA where we met Dr. Antonio-Delgado Escueta.

Elisa is 21 now and she can still walk if we hold her hands. She barely speaks, cannot read anymore. She spends most of her time sleeping or watching DVD’s. She still smiles a lot, but she does not understand things. We won’t tell her what is wrong; there is no point to that. We take her to as many places as we can. We got to NASCAR at the California Speedway, Big Bear, and the desert where she loves to ride in the dune buggy with her dad. We try to keep her life as happy and fulfilled as possible.

Elisa has been sick now for seven years. Time is running out. We need to find a cure. Dr. Escueta is our only hope right now. He needs donations towards his research.

Please donate to “Chelsea’s Hope,” not just for Elisa, but all the kids (young adults), that deserve to live their lives.

Sincerely,

Tom, Mari, Will and Elisa Brackin

Galleria Classic Theme

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


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