Over the last year Elisa has gotten progressively worse. We are into our 8th year with this terrible disease. I know that Elisa has faired better than some of the other kids. She can still walk short distances if I help her. She can still eat by herself, but more and more lately I have been helping her. She still loves to go camping in the Toy-Hauler, but the stairs are getting more difficult for her to negotiate. If we get her outside with all the animals she really enjoys it, but it is getting harder for her to go out. She sleeps a lot and lays in bed and watches her dvds. She watches the same ones over and over. I think she doesn’t retain information very well anymore so repetition is comforting to her. She will be getting a Yorkie puppy for her birthday and “dad” bought her some books with lots of pictures all about the Yorkie breed. She tries so hard to read. It’s so sad to watch because she used to be an avid reader. I think she realizes somewhat that she is very ill. We don’t tell her the whole truth, only that we are doing everything we possibly can to get her better.

We had all these big plans for our family when the kids grew up, but now our lives are on hold. Our oldest, Will, is getting married net May. I only hope that Elisa can wear her bridesmaid dress and stand up with the rest of the girls. Tommy and I don’t go anywhere together anymore unless we can get Elisa to go too. He works everyday and I stay home with her. We have a lot of family close by and once in a while my son, or one of our sisters, will watch Elisa so Tommy and I can go out for a few hours. I think this whole ordeal has made our marriage stronger, but we kind of go through the days stuck in limbo. Every day is the same. I actually look forward to my Sunday morning trips to the grocery store! Sometimes I think I will forget how to drive! My poor horses don’t get out much anymore. I’m lucky if I get to ride once or twice a month.

I feel so selfish thinking about all the things we can’t do anymore, when my daughter is lying in bed all day and really can’t do much else, but the disease has affected the whole family in so many ways.

I guess all we can do is hope for the best, smile and just keep up the faith. We still have our beautiful daughter and I’m thankful for that.

Mari Brackin
Poetry by Mari Brackin

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!!