Malwinka suffers from a terrible disease! Help stop the Rett syndrome!

In my life, I've experienced both tragic and happy moments, but it wasn't until I learned about my daughter's disease that I discovered what emotions I am capable of. As a father and an athlete, I won't surrender, and I will fight for my daughter's life! I must ask you for support, though. We won't succeed without you! Malwinka has a chance for recovery, and I will do my best to make it happen. 

My name is Bartłomiej Marszałek, and you may have heard about me - I am a Polish F1 powerboat driver. I kept my personal life private until now. I decided to tell my story for the sake of my beloved daughter, who is very sick and needs your help.

For many years, I participated in numerous charitable events, helping people in need. I didn't expect my daughter to become one of them, though.

The good news is that Rett syndrome was detected early, thanks to my wife's maternal instincts. Despite the doctors reassuring us about our daughter's perfect health, we did our research and ordered through genetic testing. The results sounded like a sentence! 

Children with Rett syndrome are often called "living dolls" or "silent angels". Although it's unfair and heartbreaking, it's also adequate and shows what happens to girls who don't receive treatment on time. 

The symptoms include loss of mobility, loss of speech, disinterest in other people, weakened immune system, breathing issues, epilepsy, encephalitis, and other health issues. It's a terrible fate for an innocent child! 

We had to act fast despite our initial shock, disbelief, and despair.

We became Rett syndrome experts and even learned about all treatment methods available worldwide. 

Finally, we saw the light at the end of the tunnel! 

We found a new drug oral solution that slows down the progression of the disease! A single bottle covers only one week of treatment and costs 10,300 dollars, though. 

Malwinka will take it until gene therapy - a chance for recovery for children with Rett syndrome - gets FDA-approved. 

This promising treatment will soon be available in the USA. Meanwhile, female pediatric patients are dosed in gene therapy clinical trials. So far, the outcomes are promising. A healthy gene is delivered to cerebrospinal fluid in the brain to replace the mutated gene and stop the progression of the disease. The estimated cost of gene therapy is 3 million dollars. 

It is a chance for all girls suffering from Rett syndrome, including our little girl! If only she lives to receive it… As soon as it's available, we will change the goal and amount to raise. 

Meanwhile, we pin all our hopes on a oral solution - a treatment recommended by American doctors, which she's been taking since last year. Her health condition has improved compared to her peers who have the same disease. 

This hope keeps us going. Otherwise, we wouldn't have the strength to get out of bed. We must do everything to prevent our child from the tragic consequences of Rett syndrome! 

Malwinka received treatment at the last minute. Only a week before, she had developed her first terrifying symptom. While she was sitting on my lap, her irises suddenly went up so high that we could only see the whites of her eyes! We knew if we didn't intervene, it would only get worse! 

After one week after taking the first dose, symptoms like nystagmus, sleep apnea, and hyperventilation disappeared, and now she can sleep the whole night! It's all thanks to the new treatment, which cannot be stopped - otherwise, the consequences will be tragic. 

That is why we must ask you for help. We have spent almost all our life savings. Once a month, I fly to the USA for a new bottle - it's cheaper than the shipment. Although we don't regret any penny spent on our daughter, soon we'll run out of money. Malwina still has at least 2,5 years of treatment ahead of her until gene therapy is approved for children of 4 years of age and more. 

On behalf of my wife, our daughter, son, and me, I am asking you for support from the bottom of my heart. We've already come so far! We cannot deprive Malwinka of a chance for a normal life! Thank you in advance for every donation! Thanks to you, our hope won't die.