26th of January 2023
Prayer of Klara on radio Maryja - Broadcast for children: Guardian Angel 26th of January 2023 19:30
29th of December 2022
We have finished the regular charity collection on the Siepomaga website, because we have purchased a stock of the Argentinian medicine Trixacar for several months. Since 7th of June 2022 the amount of 94 283 , 88 PLN has been collected on the Siepomaga website (100 302 PLN, which appears on the Siepomaga website minus the 6% commission charged by the Siepomaga Foundation for conductiong the collection). The entire amount was spent on the purchase of the Argentinian medicine Trixacar. We are looking forward impatiently to lowering the reimbursement age in Poland for original Vertex Pharmaceuticals medicines, which according to various predictions, is supposed to take place in the new 2023 year.
On the Siepomaga website, it is still possible to help Klara and make a donation at www.siepomaga.pl/en/klara-kukulka. It is also possible to allocate 1,5% of the tax in Poland to Klara's sub-account in Siepomaga - KRS Number: 0000396361, Specific objective 1,5%: 0208116 Klara
First of all, we encourage You to contact us directly at the e-mail address in the footer of this website, if any of You would like to help Klara in any other way.
24th of December 2022
This year Klara reached the first very important milestone in her life. She hes been treated with an Argentinian medicine for two months now. During a two-week stay in the hospital in the first half of December Klara had tests that confirm its beneficial effects.
It wouldn't be possible without each of You who donated every amonut for this purpose.
It wouldn't be possible without a lot of people who helped us and continue to help us at every stage of treatment.
Finally, it wouldn't be possible without the Argentinians who brilliantly copied the American medicine Trikafta and produces their Trixacar at much lower price.
The disease will accopmpany Klara for the rest of her life and she must also use the medicine throughout her life. Therefore we are waiting impatiently for it to be reimbursed in Poland. However, the bureaucratic machine takes time so it may take many more months.
We wish You All a Merry Christmas and Success and All the Best for the coming New Year !
Thank you for every donation for Klara's medicine ! Any amount was worth gold !
May God's Child reward you a thousand times with every Gift of the Heart for this purpose !
16th of December 2022
we made the second purchase of 4 packs of Argentinian medicine Trixacar of Gador company for a total amount of 15440 American dollars - 3860 dollars per packaging. 4 invoices (a separate invoice for each package) can be viewed here → link.
It was possible only with Your help ! Many Thanks !
12th of December 2022
Nursery school which Klara attends to is holding the auctions of Christmas decorations. Auctions only until Tuesday 13th of December, 4:00 p.m. We invite you to participate 😀
5th of November 2022
Video of the concert - the moment of our speech
23rd of October 2022
A charity concert for Klara will be held at the State Music School of the first and second degree in Mielec on Saturday on the 5th of November 2022, starting at 11:00
The concert can be watched online on the school's YouTube channel PSM Mielec Transmisje.
26th of September 2022
we made the first purchase of 4 packets of the Argentinian medicine Trixacar of Gador company for a total amount of 15560 American dollars. Of which from the funds collected in the Siepomaga foundation we bought 3 packets of the medicine for the amount of 11670 American dollars (so far we have not collected more from the foundation, the amount visible on the Siepomaga profile is the total amount collected from the beginning of the collection, transactions carried out in the meantime are not deducted from it), while from other collections we bought one packet for the amount of 3890 American dollars. You can see the invoices here → link.
The Argentinian pharmacy allows to buy only 4 packets of the medicine at a time, so we have to buy more packets in the next four months. At the moment, we do not have the funds raised for the full 4 packets, so we ask You for further support! It is very important for Klara and affects her entire life.
Thank You all !
Keep supporting us, please !
Good morning,
our names are Jolanta and Kornel Kukułka. We are the parents of 6-year-old Klara. Klara was born in June 2016.
In March 2022, the Polish Ministry of Health launched a medicine program that reimburses the Kaftrio + Kalydeco combined therapy, for which Klara is qualified, for children aged 12 and over. Klara is only 6 years old. Therefore, we have to purchase medicines privately. The changes caused by the disease cannot be completely reversed, but they can be stopped with the therapy of these revolutionary medicines. That is why time is so crucial.
At the beginning of 2022, the European Commission approved these medicines for use in children aged 6 and over. Unfortunately, the pharmaceutical corporation Vertex Pharmaceuticals has set a huge price, unattainable for the common man. Every amount counts. Help Klara by donating any amount, please.
1300 000 Zloty (PLN) / 270 000 Euro – the cost of approximately a year of treatment (annual makes sense) with Kaftrio + Kalydeco.
There is also an Argentinian substitute (two in one) of these medicines called Trixacar of Gador company. Vertex Pharmaceuticals has patented its medicines everywhere except Argentina. This medicine has the same active substances as Kaftrio + Kalydeco but is about 5 times cheaper. The cost of one year therapy with this medicament is approximately 250 000 Zloty (PLN) depending on the dollar exchange rate. Nevertheless, it is still a huge price for us.
www.siepomaga.pl/en/klara-kukulka
Do you want to learn more? Look below:
Visit the website of the Polish Ministry of Health (mz.gov.pl) ➛ Usługi i informacje (Services and information) ➛ Refundacja (Refund) ➛ Lista leków refundowanych - obwieszczenia Ministra Zdrowia (List of reimbursed medications) ➛ Obwieszczenie Ministra Zdrowia z dnia 20 kwietnia 2022 r. w sprawie wykazu refundowanych leków, środków spożywczych specjalnego przeznaczenia żywieniowego oraz wyrobów medycznych na 1 maja 2022 r. ➛ 63 Podstawy limitu - programy lekowe i chemioterapia link to the file.
In the excel file in line 229 you will find Kalydeco (iwakaftor), the price negotiated by the Ministry can be found in column I: 67176 Zloty (PLN) nett for 56 bags.
In line 232 you will find the Kaftrio (iwakaftor, tezakaftor, eleksakaftor), the price can be found in column I: 47389 Zloty (PLN) nett for 56 tablets.
Go back to the Refundacja (Refund) tab, then click Programy Lekowe (Medication Programs) ➛ Choroby nieonkologiczne (Non-oncological diseases) ➛ Leczenie chorych na mukowiscydozę B112_(od_03-2022).docx
link to the file.
The first point of the first column in subsection 5 lists the Kaftrio treatment in combination with Kalydeco that Klara would have qualified for if she were 12 years of age or older.
Television publications about Klara:
• TVP3 Rzeszów 9-11-2022 Koncert dla 6-letniej Klary z Mielca
• TVP3 Rzeszów Aktualności 9-11-2022, from 19'55'' to 22'35''
• TVP3 Rzeszów 27-10-2022, "Pomoc dla Klary z Mielca"
Radio publications about Klara:
• Radio Rzeszów 2-11-2022, ""Walka o każdy oddech" - w Mielcu koncert na rzecz Klary chorej na mukowiscydozę"
• Radio Rzeszów 18-07-2022, "Jest szansa na znaczną poprawę zdrowia 6-letniej Klary z Mielca, która choruje na mukowiscydozę"
Internet press publications about Klara:
• hej.mielec.pl 12-12-2022, "Ostatni dzwonek na licytacje dla Klary!"
• nowiny24.pl 8-11-2022, "Charytatywny koncert dla Klary z Mielca. Dziewczynka walczy o każdy oddech [WIDEO]"
• korso.pl 5-11-2022, "Charytatywny koncert dla Klary [ZDJĘCIA, VIDEO]"
• hej.mielec.pl 5-11-2022, "Muzycy dla Klary. "Liczymy na dar serca" [FOTO]"
• wcj24.pl 4-11-2022, "Walka o każdy oddech - Koncert Charytatywny"
• zdrowie.gazeta.pl 2-11-2022, "Mukowiscydoza: 6-letnia Klara ma już leki. To za chwilę może być największy problem"
• korso.pl 31-10-2022, "Mielec. Koncert charytatywny dla Klary. Ty też możesz pomóc"
• mielec.naszemiasto.pl 23-10-2022, "5 listopada zagrają dla Klary z Mielca, chorej na mukowiscydozę"
• hej.mielec.pl 21-10-2022, "Zagrają dla chorej Klary. Koncert 5 listopada"
• zdrowie.gazeta.pl 30-08-2022, "Jest skuteczny lek, ale 6-letnia Klara go nie dostanie. Rodzina próbuje ją ratować"
• rzeszow.wyborcza.pl 14-08-2022, "Co robić, gdy życie dziecka wyceniono na setki tysięcy złotych? Rodzice Klary walczą i proszą o pomoc"
• korso.pl 5-07-2022, "Rodzice Klary Kukułki z Mielca: Walczymy o każdy oddech"
• nowiny24.pl 15-06-2022, "Klara walczy o każdy oddech. Pomóżmy zatrzymać mukowiscydozę!"
• hej.mielec.pl 11-06-2022, "Sześcioletnia Klara z Mielca czeka na pomoc"
Paper press publications about Klara:
• Korso 8-11-2022, "Klara walczy o oddech"
• Korso 2-11-2022, Notatka o koncercie i plakat
• Gazeta Wyborcza Tygodnik Rzeszów 12-08-2022, "Życie dziecka wycenione na miliony złotych"
• Korso 5-07-2022, "Walka o każdy oddech"
• Nowiny 20-06-2022, "6-letnia Klara z Mielca walczy o każdy oddech. Pomóżmy zatrzymać mukowiscydozę!"
last website update on the 26th of January, 2023
kornel.kukulka@darowiznanalek.pl