Trapped within diseases! Let’s save Antoś!

I am a father to 8,5-year-old Antoś, and today I need to ask you for help. 

Our lives changed forever a year and a half ago. My son, who was in preschool, suddenly lost control over his behavior. He started to scream, physically assault other people, run around the classrooms, and escape from the teachers who tried to calm him down. 

We couldn’t understand the reason for this odd behavior. What happened to our beloved child? 

He showed similar behavior at home, which was scary. He screamed or cried and was aggressive. The worst and most shocking thing was that he didn’t remember or couldn’t explain his actions. 

We were so worried about our son’s condition that we took him to the hospital. After many examinations, he was diagnosed with epilepsy with absence seizures. He also suffered from Covid-19 complications and had an elevated ASO value. We were devastated…

The first treatment failed, so I quit my job to care for my son. Antoś went on a gluten-free, dairy-free, and sugar-free diet. After dietary changes, we switched to a different epilepsy drug according to the doctor’s recommendations. 

The diagnosis was reevaluated after test results came from Polish and foreign laboratories. Again we were horrified… Our son had Asperger syndrome and Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS), a type of Autoimmune Encephalitis!  

We implemented another treatment, which was also ineffective. Finally, the doctors from a clinic in Gdańsk recommended a new therapy - 3–6 cycles of intravenous immunoglobulin. Unfortunately, a single cycle costs as much as 38,000 Polish zlotys! It’s an unbelievable amount! 

I guess the worst thing is a feeling of helplessness when there is an opportunity to rescue your child, but you are out of resources to provide it… 

The first stage of the treatment is possible only if we pay the whole amount in advance. The National Health Fund (NFZ) does not reimburse that type of therapy, and we cannot afford such an expensive treatment. However, the sooner our son undergoes the procedure, the higher his chance of full recovery. 

Antoś is extraordinary, has a great memory, reads a lot, and likes math. Unfortunately, his childhood is full of never-ending medical appointments and consultations.

Please, help us fight for a better life for Antek! We cannot afford the treatment, which might be his last chance to survive… 

Antek’s parents