In mid-April, we received an e-mail from Ensign Samuel Chramosta asking for help. His son Adam suffers from a very rare genetic disease, spinal muscular atrophy. Due to the missing SMN1 gene, which produces proteins for motoneurons in the muscles, patients with this diagnosis gradually weaken and lose muscle, thus worsening their ability to move. Affected in this disease are mainly the feet, however, patients also swallow harder and later have difficulty breathing. The progression of the disease is individual, however, patients do not live to be old without adequate treatment. When they heard this from Chramost, it was only ten months for Adamek. Therefore, he started receiving SPINRAZA regularly. However, a relatively recent treatment has emerged, with ZOLGENSMA. It is a gene therapy and thanks to a single dose of this drug, the progression of the disease can be completely stopped. This treatment has "only" two limitations: it is necessary to deploy it before the age of two, ie. in Adamek 's case to 17. 6. 2020, and pay for the treatment and the costs associated with it. So we didn't hesitate for a second and started acting immediately. Because it wasn't clear at the time, whether it will be possible to apply the drug in the Czech Republic, and especially to catch all this for Adamek's second birthday, we contacted a children's hospital in Philadelphia, USA (The Children’s Hospital of Philadephia), where they have the greatest experience with the drug. They immediately wrote back to us, what they need from us, and therefore, on the basis of their instructions, we had all the medical reports translated into English and filled in the questionnaires sent by them. But we still believed, that there is also a "Czech way". That is why we also contacted the director of VZP in writing, the Minister of the Interior and the Prime Minister with a request for assistance. In person, we even visited the President's Office and asked for the support of the President. We also launched a campaign here on social networks and asked for a financial donation from each of you, who can and wants to help. In day, when Mr. Samuel Chramosta first wrote to us, Adamek had on a transparent account about 7 million crowns. O 12 days later it was already 12 million. Thanks to all of you! And the good news was on the rise. Sunday 26. 4. announced Prime Minister Andrej Babiš in his weekly report, that Adamek and two other children with the same disease will be paid for expensive treatment by a health insurance company! On Monday, this fact was confirmed to the REGI BASE fund directly by the Prime Minister by telephone. The most expensive medicine in the world will be administered by the Motol hospital and paid for 100 % health insurance.
Greetings from the hospital in Motol! This photo, and especially today is one of the most valuable. Just before 19 days our ensemble was addressed by Ensign Samuel Chramosta, member of the Police of the Czech Republic, asking for help with his son's treatment. Adamek has been diagnosed with SMA, ie. spinal muscular atrophy, the lek, which could help him, stands 65 million crowns. But it must be applied until the second birthday. And Adam already has you 17. June. And today we all met in Motol, because in a few days Adam will receive this therapy. Incredibly? It seems to us as well. Although it is far from won, we would like to thank all of them in this way and for the whole Chramost family, which we will mention below.
So let us once again thank the President on behalf of the entire Chramost family, to the Prime Minister, General Health Insurance Company, Motol Hospital and everyone, who you have decided to support Adamek on his journey. And it doesn't matter, whether it was a specific financial gift or "just" sharing his story with other people.
Nice to meet you, that after many years with the police, when prap. Samuel Chramosta helped and is helping others, gets it now, when he needs it, help him and his family. And we are happy, that the REGI BASE I endowment fund. again it fulfills its role, thus helping them, who served for us.
You can find more about Adam Chramosta's story on the website www.adamkovacesta.cz.