The story of Gajic
Dear friends,
I am Snjezana Gajic, pediatrician, from Banja Luka (Republic of Srpska, BiH), but above all, mother of girls suffering from Lafora disease. Imagine having two healthy teenagers, brilliant students, doing sports, learning foreign languages, whose days are always too short to complete everything they planned to do, like most of teenagers while having their wings fully spread. Just then it happened! In the dawn of their youth, cruel destiny decided to „move“ them from a flowery, youth path to a path full of thorns and despair.
Our older daughter Tatjana comes from school one day and sais: „Mom, what’s happening to me, I forgot how to walk? “ Very soon shi is having her first epileptic attacks, just like our younger daughter Milana. One day, at the beginning of school year, Milana came home from school, threw her backpack on the bed and began to cry comfortlessly. After she came to breath, she said: „Find me an Abc-book, I forgot how to write.“ I would like to mention that it happened by the end of elementary school and that, until then, they were completely healthy girls. Soon, Professor Jovic from the Neurology Clinic for Children and Youth, diagnosed Lafora disease. I am not ashamed to admit that, as a pediatrician, I didn’t know many details about this disease. On the internet you can find that it is a progressive and fatal myoclonic epilepsy, one of the hardest, by some opinion the hardest ever, hitting human race. The world crashes and all that remains is to nurse your children and wait for the end to come. You have to ask yourself, is it possible that there’s nothing we can do? Impossible! Nothing at all!
My husband and I didn’t allow this great misfortune and agony to disable us. Very soon we rebelled against destiny, rose like a Phoenix from ashes and decided to find a way to make some changes. We contacted Professor Minassian from the SickKids Clinic in Toronto, a man who discovered the genetic background of Lafora disease. Since then, for some years, our little family is a „dedicated donor“, as the management team of the SickKids Clinis named us in their Letter of thanks. Since then we have sent around 500.000 EUR, either directly to Professor MInassian’s team or indirectly to associates, according to Professor’s recommendations. Ways to collect funds are various. The last donation was collected by sale of the Book I have dedicated to our daughter Tatjana and through her to all Lafora children in the World as well as persons suffering from rare diseases in general.
Our older daughter Tatjana lost her battle for life against this mean disease on October 14th 2014 so I named the Book – She lost the battle for life, but she will defeat Lafora disease.
On the day of her funeral we made a promise never to stop in our attempts to contribute this disease to be removed from the face of earth.
This is just a part of our story. You can find more on our site www.lafora-tacamiki.com and on Facebook: Izgubila životnu bitku, pobijediće Laforinu bolest
With love,
Snjezana and Vitomir Gajic with Milana (and Tatjana in Heaven)