Anna and Ondřej Lundákovi
Vincent - jeden ze dvou
Our son Vincent is one of two people in the Czech Republic who was born with a very rare disease – Lethal Encephalopathy. He suffers from severe epilepsy, takes many medications, is fed through a stomach tube and does not move at all. There is no cure for his disease yet. It is a progressive disease and at this moment Vincík is already in palliative care.
We spent a lot of time in the hospital and thanks to the great team of doctors, we are able to continue at home. This, of course, requires continuous, round-the-clock care. We are always on standby. Of course, the older our little boy gets, the more physically demanding it is for us. We try to make sure that he experiences the best possible moments.
It is very painful for us as parents that our child will not live long. For a long time we lied to each other that everything would be fine. Over time, we understood… I often cried, fell into despair: will we stand it as husband and wife? Can we make it financially, mentally and physically? I won’t go back to work? My husband was with me in everything from the beginning, he helped me, kept me afloat, gave me room to breathe. We held on to hope, but Vincent’s deteriorating health and the fight for his life made us realize that nothing would be as we had dreamed. We have learned to live with that too, grateful for every day. But it is not possible without help.
Early intervention started helping us from the first moment, it is with us. The ECI specialist comes to our house, monitors Vincent’s development, takes his health into account. It allows us to experience common joy in the comfort of our home environment. He is a support for us in psychologically demanding situations, he passes on contacts to other services that will help relieve us. We can turn to her at any time with a request for the information we need. We are glad that we are not alone in such a difficult situation. We try to enjoy the little things with our son every day and live it together with love.