The story of Snjezana
From the book “TACI”, by the author Snjezana Gajic, mother of a girl named Tatjana, who lost her battle of life against the Lafora disease. A documentary has been filmed about the story and fight of the Gajic family to collect financial means in order to finance researches for a cure against Lafora, a disease their other daughter Milana is also suffering from. This documentary is called “The Faces of Lafora” and it was shown on September 5th 2017 at the 32nd International Epilepsy Congress in Barcelona, as well as at the European Parliament in Strasbourg on December 13th 2017.
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“RARE CHILDREN” ARE NOT LESS WORTHY
A rare tree takes roots where other plants cannot, on the edge of the abyss, it strengthens the ground, saving it from mudslides, grows and gives beautiful fruit; a rare orchid is the most appealing, because it grows in inaccessible places; rare birds are coloured with most magnificent coulours; “RARE CHLDREN” are not less worthy…
I consider it a blessing, the opportunity to be the voice – conductor of all children suffering from Lafora disease, but also from rare and hard diseases in general. It is the only way for them to become visible, because they cannot leave their beds, their voice cannot be heard… They can only afflict with a tear that enables you to become a shade or a shadow of their youths rebellion, defiance, but they can also make you happy with a smile that awakens your sixth sense, which shows you the most important things in life, which shows you the only right road, the road of love.
WHAT IS… WHO IS… A LAFORA CHILD
A strong ant, Which carries a burden larger than itself; A determined swallow, With no end of the path in sight; A persistent river, Digging a canyon, defying a mountain; A tenacious beaver, Building a dam, in spite of water;
A joyful bird Sings the most beautiful melodies after the storm; A gentle butterfly Distinguishes beauty with great skills; The tallest poplar Binds with shiny stars; A bright shiny sun Becomes glory and ode to life.
They are wise, To live is an imperative, they are well aware; They are skilful, For they find a way to remain persistent; They have a lot of virtues, Doing the impossible when everybody withdraws; They are broad-minded, Equally accepting both happiness and sadness; They are generous, Giving up what little they have; They are merciful, Stroking everybody just like the sun and the moon; They are the teachers of life, By shining, they illuminate our path.