BRAIN ON FIRE- help for Mikolaj -Intravenous Immunoglobulin treatment .

We are losing him with every upcoming day. The smile on Mikolaj’s face disappears, almost as soon as it appears. As the days go on, he drifts further and further away from us. He escapes into his own, little world, because he does not understand ours. He screams, bites his fingers- harms himself in a feeling of true helplessness…

Up to the age of 18 months, our life was like from a dream. Our son was healthy. Mikołaj filled our home with laughter. He played with his favourite toys, laughed his head off and even tried humming his best- loved songs. In a nutshell- he was constantly bringing happiness into our lives. All this was until, he came down with chickenpox…

Suddenly, something happened. Something, that cannot be fully explained to this day. Mikołaj’s smile began to fade, day after day. He forgot how to play with toys, his gaze became distanced and lost. We had no idea what was happening. We looked for help everywhere, but nobody was able to tell us, what was going on with our child. We tried everything- to no avail.

Currently, Mikołaj is 8 years old. He does not know how to speak, understands only the simplest requests, has trouble concentrating and constantly escapes into a world, we know nothing about. He requires around the clock care. If he needs something, he shows it by screaming or pushing- it is the only method he knows. More and more often, he bursts into aggression and self-aggression fits. He squeezes his head and neck, pulls out his hair and uses his entire strength to bite his fingers. Every single day is full of pain and anguish- both his and ours. We are feeling more and more helpless, but which parent is able to remain idle to their child’s suffering?

After many years of looking for help in Poland, we decided on diagnostics and treatment in Kiev, under the eye of neuro-immunologist- Dr Maltsev.

On November 12th 2018, we flew to Ukraine for the first set of tests. We found out, that Mikołaj’s organism is battling two viruses, which have most probably led to a nervous system disease. Additionally, the disorder of his immune system has caused chronicle infections in his body. Electroencephalography demonstrated epileptical discharges on both cerebral hemispheres.

At last, we received the answer to our son’s illness and anguish.

We were offered a high-dose intravenous immunoglobulin treatment, that is meant to stop inflammation and regenerate the brain. January 21st 2019 is the date of Mikołaj’s first infusion, which must be dosed ceaselessly for 6 months. We cannot begin the treatment, until we have the entire sum of money, which will assure its continuity. We do not have much time left, as the treatment will bring the biggest effects, while Mikołaj is still under the age of 10- up to this age, the brain is still malleable.

We truly hope and believe, that we can help our son, give him the chance to finally speak and lead a fairly normal, independent life. The thing we wish for the most, is to hear his voice, after so many years of silence. We want to free him from the prison, that is his own mind. We will not give up, but we have to act fast. Time is escaping rapidly, and along with it, Mikołaj’s chance for recovery. Hence, we are turning to you with all our hearts- please help us. Help us get our son back.

Sincerely,

Mikolaj’s parents

Milena & Marcin