Just the idea of what the parents of little Martínek must be going through is terrifying. How hard it is to live with the knowledge that your child is basically dying, and even if there is an effective treatment, the cost is so staggering that you won’t even have it for the rest of your life, let alone the few years your offspring have left. Because the treatment for Martínek costs 100 million and the insurance company does not pay for it.
Show business on alert
But the world of Czech show business came to the aid of little Martínek. Only thanks to Nikol Leitgeb, Jana Bernášková, Veronika Kašáková, Lucia Křížková, Ester Geislerová, Barbora Strýcová, Martina Pártlová, Martina Gavriela, Julián Záhorovská, Leoš Mareš and other famous people does the cute two-year-old boy at least have a chance at life.
They all share his sad story, contribute to his treatment and, above all, encourage the public to join them. Lucie Šlégrová even called Kazma for help in a funny way, whose million dollars (roughly 22 million crowns) is still waiting in a glass safe for the winner to decipher the code from his film ONEMANSHOW: Movie. The chance to win will pass in the early evening, so Šlégrová urges Kazma to give the money to Martínek. “If Kazma takes out the money and adds it… I’ll personally come to clean his whole apartment and clean his windows, shine his shoes, brush his hair… and Jirka will cook him a sirloin steak,” she wrote on her Instagram. How Kazma will react to this “challenge” is hard to guess, but the fact is that such money would really help the little boy a lot.
Photo: Donio.cz
Treatment for Martínek exists, but it costs 100 million. Photo: Donio.cz
Little warrior
At the age of three months, he ended up in the hospital with acute bronchitis, subsequently he was hospitalized many more times and it began to be resolved that something was really wrong. When he was one and a half years old, the problems worsened to such an extent that without constant suctioning with a tube (sometimes the parents suctioned several times an hour), the little boy could not breathe or take food. Complicated feeding and frequent vomiting eventually led to Martínek’s overall malnutrition, but eventually a diagnosis came.
What is AADC syndrome?
It is a very rare genetic disease, there are only about 120 confirmed cases in the world. It is caused by insufficient function of the enzyme AADC, which is responsible for converting amino acids into neurotransmitters, which are responsible for communication between nerve cells.
People with this disease suffer from severe neurological problems, muscle weakness, movement disorders, sleep disorders, swallowing problems and many other symptoms that are very individual and there is no uniform pattern.
Unfortunately, Martínek suffers from the most severe form, he cannot move, only lie down, in fact he cannot even hold his head upright without help. He suffers from muscle spasms, frequent vomiting, has a weakened swallowing and sucking reflex, which is why he is constantly excessively muddy. Medical forecasts are such that children with this disease do not live more than five to seven years.
Photo: Donio.cz
Martínek with his father and older sister Photo: Donio.cz
There is a cure, but…
Immediately after the diagnosis, treatment began, but only symptomatically. Thus, individual problems are alleviated, but the disease as such is not cured. But there is a gene therapy with the drug UPSTAZA, and if it is used in time, almost all the acute problems that the boy has should disappear completely. But it costs about 100 million crowns in conversion and the insurance company will not pay it.
Therefore, the family tries to get money in other ways, through the collection on Donio.cz. And thanks to the massive help of famous personalities, it is successful, this morning almost 52 million crowns were already in Martínek’s account. And as scary as it is to convert the value of a child’s life into money, quite a large amount is still missing. Let’s try to be better than all the insurance companies, than all those regulations and paragraphs that determine how much money can be invested in human life and how much is too much. Let’s try to give one small child a chance at life and one family a chance at the miracle they desperately hope for. And let’s make ourselves feel good about the fact that humanity and solidarity has an incalculable value and is higher than any amount! You can do it via this QR code or just take it easy via the Donio.cz website.
Photo: Proženy.cz
You can donate by scanning this QR code directly in your online banking. You can freely adjust the amount Photo: Proženy.cz
2023-09-25 10:00:11
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