Tatjana's story
                        

Thank you Tašo for all your time and love that you give to your friend Tatjana. 28.12.2009. (18. rođendan)

Despite all her suffer, caused by the cruel Lafora disease, she has a caching spirit and a shining smile lightening life around her. Her large dark glowing eyes, full of gratitude for everyone being nearby, are shining great love and tenderness.

Tatjana was a healthy, good, noble girl. She was an excellent student, liked to read so much that a new book would make her happier than a new dress.
As a little girl she wanted to visit ballet lessons, so she did, later she wanted to dance and was delighted with every performance. She played tennis and skied so good that she was even advised to participate on competitions. She wanted to become a pediatrician one day so she could help other children…
So one day, during the second half of her first year in high school, a got a phonecall from school: „Please come, Tatjana is not feeling well.“
Surprised, for a moment lost, I was asking myself if I understood well?
We were afraid to get a call from Milana’s school because she already had some problems, Tatjana was a healthy child, what cruel destiny was it?
Unfortunately, we had to find out that she also had some kind of clonic seizures.
Diagnostic procedures followedg – MR and CT of the brain were all right, EEG showed a certain slow motion and changes, which should point to a therapy. Tatjana went back to school activities, but soon a second seizure folowed. We left with both girls for a consulting check up to the Neurological Institute for children and youth in Belgrade.
Professor Jovic and his associates got suspicious and ordered some gene tests, the diagnosis: MORBUS LAFORA (NHLRC1, EPM2B).
DESPAIR, SADNESS, DISBELIEF.
There are no neurological diseases in both of our families, but here we are dealing with the cruelest genetic lottery, sequence of gene mutations from both parents.
Only later, on the Internet we found a commentary of a parent: “OUR CHILDREN ARE SENTENCED TO DEATH, WITHOUT OUR GUILT.“

During these days in Belgrade we were hiding the cruel truth from the two of them, but they felt there’s something awfully going on.
I remember when Taca, during a walk, suddenly sat on the walkway and started to cry. She showed me a message she received from her schoolmate, a message shining support, kindness and the wish Tatjana to come back to school as soon as possible.
I will also never forget what her friends, during their first visit after we came back to Banjaluka, said: „Mrs. Snjezo, how could this happen to Tatjana, she is the best of all of us.“
Only a child can say something like that and be so sincere, warm and noble.
Even today, this kindness means a lot to Taca.

Congratulations for 18. birthday, in the form of poem, sister, mother and father attempted to describe her, but there is no words...
 
I lOVE YOU SISTER

WHOLE OF MY SMALL LIFE
I FOLLOWED ONLY YOU
GENEROUSLY, KIND AND GOOD
I SAW MYSELF THE SAME WAY.

TO READ MUCH I LOVE
YOU TAUGHT ME HOW TO
IT’S NOT EASY TO UNDERSTAND THE WORLD
BUT BOOKS MAKE IT EASIER

ALL LIVING THINGS ON EARTH
YOU LOVE SINCERE AND MUCH
ME AND ALL OF OUR FRIENDS
WE HADE TO LEARN ALL OF THAT

"WATCH OUT, DON’T STEP ON THE SMALL ANT,
HE HAS THE SAME RIGHT ON LIFE AND SALVATION
THE FACT THAT HE’S MIDGET AND SMALL
DOES NOT MEAN HIS SMALLER THAN WE ARE"

I LIKE TO WRITE MY DIARY A LOT
THAT ALSO YOU TAUGHT ME HOW TO
WHILE WE ARE SMALL AND INSECURE
IT IS HARDER TO SAY THAN TO WRITE

NOW WITH YOUR EIGHTEEN YEARS
YOU WILL REMAIN THE SAME AND ALL YOURS
IN THE BIG WHITE WORLD
YOUR SISTER LOVES YOU THE MOST

28.12.2009
MOM AND DAD LOVE YOU

EIGHTEEN LARGE YEARS
YOU’RE TURNING THIS YEAR
WE WISH YOU TO DREAM A LOT
AND TO LIVE THE BEST OF YOUR DREAMS.

MOM AND DAD YOU WISH YOU
FROM THE BOTTOM OF THEIR HARTS
ALL HAPPINESS IN THIS WORLD
IF SHARED ON MERIT
A GREAT PART BELONGS TO YOU.

AS MUCH AS KINDNESS REPOSES IN YOU
THAT MUCH LOVE YOU SHARE WITH EVERYONE
BECAUSE ONLY WHO HAS A LOT OF LOVE
CAN SHARE IT WITH OTHERS

THEY SAY YOU’RE NOT A CHILD ANYMORE
WHEN EIGHTEEN YEARS PASS
BUT IN YOU THERE WILL STILL BE LOVE FOR ALL
EVEN WHEN YOU TURN EIGHTY.

28.12.2009.

Unfortunately, Tatjana was headlong decaying, she didn’t reconcile with her destiny, refused food and, despite all efforts, she rapidly lost weight, her immunity system dropped. During that winter she suddenly lost her favorite aunt who had been a great support to her.
As a doctor, I am convinced that this additional stress led her a few days later into a strong pneumonia. A three months long agony started, a fight for her life, atelectazis, tracheotomy, secondary intra hospital infections…
Taca, anyway, managed to win this battle.
After leaving hospital, she never got back on her feet again, but has strengthen in every way and hope for life returned.
Right now unsolvable problems are often and painful colic because of frequent urination of kidney sand and stones.  
There are days without pain when she’s happy for every move she makes while exercising. But, there are also days when she strongly wants to say something, participate in conversation, but saying even one word is hard or even impossible. Those are perhaps the hardest moments and these tears roast the most.
Often she is complaining to her sister while she’s sitting next to her bed trying to read to her or to recount some of their old stories.
Milana is often kicking us out of the room and whispering something on Tatjana’s ear.
Sometimes, this whisper is loud enough for us to hear:
"
Come on, sis, give it a try, get out of this bed, do you know how much I miss you?"
They teach us what patience and unconditional love are. Many friends have disappeared, phones got quiet, most of the time they are directed at each other. That’s not only our story; unfortunately, this is the destiny of almost every story of this kind.
There are many reasons: discomfort, disbelief and fear to disturbance…
The truth is that it’s very difficult to be friend with someone who has lost a big part of himself. But, believe us, a great part is still there and it is going to remain there for a long time. You should not judge a book by its covers, you have to gain strength and give it a try… They need friends, relatives, neighbors to fight in this hard battle, but we are not saying this as a criticism, but as an encouragement...

Hope and a will to live have returned to Taca and for sure she has a lot of resources not easy to be destroyed. Every day we are feeding her hope, which she surely needs as much as food itself.
This hope is being transferred to her through stories of how Professor Jovic, Professor Minassian, Professor Escueta… are going to
make vitaminswhich will strengthen her muscels so she will be able to swim again, all the way to the buoys.
These great enthusiasts are working hard and they are convinced to be on the best way to reach a solution.

WITH ANY KIND OF INVOLVEMENT IN OUR FIGHT, YOU ARE HELPING US TO BUY TIME
THE ONLY DISPUTE THING.