The story of Zhana
My name is Zhana. I’m a mother of one-year-old Dachi. He has a rare genetic mutation of SCN2A Gene.
From the third day of his life Dachi has had hundreds of seizures and he is developmentally delayed. Despite all Dachi is the happiest boy I know.
Our journey in the rare disease world started from Dachis diagnosis at the age of three months. Before that, we had horrible three months of uncertainty, disappointment, and fear. Fear that we would lose our baby boy.
With the diagnosis, we find a family of SCN2A full of parents ready to answer all the questions.
With the diagnosis, we find the devoted doctor and right treatment for Dachi’s seizures and it changed everything.
With the diagnosis, we find a hope that someday Dachi will have the best future he deserves.
But for today there is no cure for Dachi’s rare disease. Today hundreds of other SCN2A kids are suffering from uncontrollable seizures.
When I was told that there is no cure
for Dachi, I said how is that possible. Thousands of dollars are spent on war, on spaceships. But why the hall I need discovering space when my son can’t even step on the ground.
Instead of recording Dachi’s seizures, I wish I could record his first steps, his first words.
I truly believe that after twenty years all rare disease patients will have the cure and no more kids and parents will suffer. I truly believe that someday Dachi will say “I love you, mommy”.
Before that, we should make the world the best place for every rare disease patient. We have the power to make a difference and so we should make a difference.
Happy rare disease day!