Life Lessons

– contributed by Chelsea’s friends, Danielle and Alyssa

We entered Chelsea’s life after she was diagnosed; after many of her long time friends had disappeared. Admittedly, it is hard to consider friendship with someone who is seriously ill, someone who has suffered from some loss of cognition.

What began as a gift to Chelsea, however, turned into countless, unending presents for us.

Knowing Chelsea and spending time with her has been one of the best things we have ever done. She is a wonderful and warm human being whose smile lights up entire rooms and we are thankful to her for being our friend. These are some of the things that we have learned from Chelsea.

  1. We’ve learned to appreciate the moment
  2. We’ve learned to stop and HEAR the music
  3. We’ve learned to remember to marvel at the blue sky and wonder about the puffy clouds
  4. We’ve learned to find something nice to say about everyone
  5. We’ve learned to appreciate our health and fortune
  6. We’ve learned that our good health IS our fortune
  7. We’ve learned to appreciate the gift of friendship
  8. We’ve learned to find joy in a smile
  9. We’ve learned that lime green is the best color
  10. We’ve learned that dogs have an innate sense of compassion
  11. We’ve learned to let our feelings be known
  12. We’ve learned to hug with everything we’ve got
  13. We’ve learned that dancing is the best medication
  14. We’ve learned that being fed by others is way more fun than feeding ourselves
  15. We’ve learned that a cute smile can solve most problems
  16. We’ve learned to not get embarrassed
  17. We’ve learned to disregard the stares of others when we act silly in public
  18. We’ve learned that Tinkerbell is the best
  19. We’ve learned that beaches are the best places in the world
  20. We’ve learned to not be afraid to sing our hearts out
  21. We’ve learned that sitting and playing board games with a friend is way more fun than going shopping
  22. We’ve learned that modesty is a waste of time
  23. We’ve learned to not be afraid to hug whenever we feel like it
  24. We’ve learned that the amount of friends is far less important than the quality of the friendship
  25. We’ve learned that happiness can make you cry
  26. We’ve learned to daaaaannnce to the music
  27. We’ve learned to never judge a book by it’ps cover
  28. We’ve learned that the world would be a horrible place without cute boys


We’ve learned that anyone who
doesn’t love pickles is CRAZY!

and finally…

We’ve learned that our world has expanded so much since Chelsea chose us as her friends

LAFORA’S CHILD
Written by Mari Brackin, Elisa’s mother

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?

Poetry by Mari Brackin
Elisa’s mother

We’ve come on this journey,
From not too far,
Because like most of you,
We are the parents of a Lafora child.
I was asked to write down my thoughts, feelings, and such,
But this is very hard for me,
Because it hurts so much.
I’ve watched my beautiful daughter,
So smart, so kind, so true.
Fall from the stars, spiral down, into the deep blue.
Where once was a girl that swam, rode dirt bikes and horses,
Now is a lost soul, uncertain, controlled by unseen forces.
She shakes for no reason, can barely walk, stand or read,
Her days are all the same now,
She sleeps, eats very little, and watches T.V.
We can’t give up, we will keep trying,
There has to be a cure, some kind of a fix,
THERE WILL BE NO DYING!!!

#2

Our lives have become a living hell,
A disease of the unknown has come to dwell.
Our beautiful child once so brilliant and full of life,
Has left us and gone to a place, somewhere lost in the night.
We cry out for help, please someone come,
But we are left in the dark, so cold, so numb.
Our Lafora kids could be yours or someone elses.
All we ask is if you would listen,
PLEASE DONATE, PLEASE HELP US!!

Poem by Alice Morgan

A Mother’s heart can never heal
When part of her is gone
It’s those of us who are left behind
For them, life must go on
A song, a smell, a certain noise
Reminds us you are near
Forever in our hearts and souls
My son, forever dear