{"id":71235,"date":"2025-09-01T08:26:00","date_gmt":"2025-09-01T06:26:00","guid":{"rendered":"https:\/\/fundacjarakiety.pl\/?post_type=beneficiaries&p=71235"},"modified":"2026-03-31T09:29:11","modified_gmt":"2026-03-31T07:29:11","slug":"sylwia-kulon","status":"publish","type":"beneficiaries","link":"https:\/\/fundacjarakiety.pl\/en\/podopieczni\/sylwia-kulon\/","title":{"rendered":"A rare disease took my health, but not my hope."},"content":{"rendered":"

My name is Sylwia, I just turned 46. The year 2025 is a year of difficult experiences, for
me and my family. I thought for a long time about how to tell you about my experience.
illness and the path that led me to the point where I am now and I am asking you for help.
I've decided to share my story more broadly. I'll tell it in a nutshell and then a little later, a handful at a time.
facts. I trust that those who read my story will be convinced of the importance of intuition, persistence,
open mind and faith; and that there is a group of people around us, near and far, on whom we can count and
With their support we will overcome even the most difficult path.
I am struggling with adenoid cystic carcinoma of the base of the tongue, the cancer originates from small glands<\/strong>
The disease is very rare, with statistics showing that 5 people in a million are affected.<\/strong> Method
The treatment that gives the greatest chance of getting rid of the cancerous lesion is surgical removal.
Unfortunately my lesion is located deep in the base of the tongue muscle and has been found to be<\/strong>
inoperable<\/strong>. Removing the tumor would result in disability and unmanageable pain.<\/strong> Functions of language
like swallowing, eating, and speaking would be taken away from me. Adenoid cystic carcinoma, in short
ACC is a difficult opponent when surgery is not an option. There is no treatment.
chemotherapy and Photon radiotherapy used in Poland has a negligible chance of cure, approximately<\/strong>
10%<\/strong>With the help of my family, I researched my condition and its treatment options. I found
outside Poland, scientists, medical institutions researching ACC and I know that there is a chance for me
for treatment outside Poland. Only a few centers in the world offer heavy ion radiotherapy,<\/strong>
coal<\/strong> \u2013 for her, my cancer is not radioresistant \u2013 THIS IS MY CHANCE. Treatment is expensive,
non-refundable. I need about PLN 400,000.00 to take advantage of my opportunity.<\/strong>
The facts are behind us. For those who are patient, I promised more. Well, in January 2025, I started feeling
slight pain around the tongue while eating. The pain disappeared after eating, was not bothersome and even
It went away for a few weeks. It came back. I decided to check this unusual symptom and get tested.
magnetic resonance imaging. I'm not a whiner, but for about three years I've felt a lack of vitality,
I searched for their causes. I became interested in holistic health. I explored the issues
environmental factors as a factor influencing health, I came across some very interesting publications about
environmental and mitochondrial medicine, the importance of the microbiome, and the role of diet. I've done a lot
I implemented the research and conclusions and managed to get rid of or reduce them to acceptable levels
levels of ailments I have been struggling with for years: migraine, joint pain, mood disorders,
ineffective sleep, fatigue, a number of digestive problems. The pain in the tongue remained.
Two months passed before the referral for MRI to describe its results. The MRI result stated
the tumor at the base of the tongue was so different from the results of the laryngological tests performed
by doctors that he was questioned. Only an open biopsy performed in June
confirmed, cancer. I had intuition and did not ignore the signals coming from my body, persistence in striving
to obtain a diagnosis, an open mind in the search for effective treatment. I also have faith in
the success of the treatment, so I am asking you for help.
I want to live, I want to be healthy. I want to support my children and be with them. I want to be by my husband's side. My
the family is painfully tested. The day I read the diagnosis was also the day I<\/strong>
my 14-year-old daughter had surgery after she suffered an injury while playing her beloved handball<\/strong>
serious injury. <\/strong>We've had major surgery, excruciating pain, and concerns about our fitness. The fight for
her health continues. Her attitude in these circumstances keeps me from breaking down. She is my
the sun and I want to be her rock.<\/p>","protected":false},"excerpt":{"rendered":"

Sylwia, 46, suffers from a very rare cancer \u2013 adenoid cystic carcinoma of the base of the tongue (ACC). In Poland, it is considered inoperable, and available treatments are of limited effectiveness. Her only real hope is expensive, unreimbursed carbon ion therapy available abroad, requiring approximately 400,000 z\u0142oty. Sylwia wants to regain her health so she can be with her husband and teenage children.<\/p>","protected":false},"author":21,"featured_media":71236,"template":"","meta":{"page_title":"Rzadka choroba odebra\u0142a mi zdrowie, ale nie nadziej\u0119","first_name":"Sylwia","last_name":"Kulon","name_variation":"Sylwia","funds_collected":73470,"funds_target":400000,"currency":"z\u0142","left_on_the_subaccount":38480.76,"refunded_expenses":34989.24,"collection_on":"nierefundowane leczenie za granic\u0105, wizyty lekarskie, dojazdy na leczenie","content_update":"","number_pln":"52 1050 1025 1000 0090 3010 4252","number_usd":"PL54 1050 1025 1000 0090 8058 1367","number_eur":"PL32 1050 1025 1000 0090 8058 1375","number_gbp":"PL76 1050 1025 1000 0090 8058 1359","swift":"INGBPLPW","transfer_title":"Sylwia Kulon","recipient_details":"Fundacja Onkologiczna Rakiety, ul. Stryje\u0144skich 19 lok. U21\/21A, 02-791 Warszawa","krs":"0000414091","tax_specific_target":"Sylwia Kulon","fundraiser_iri":"\/api\/public\/fundraisers\/816"},"beneficiary_categories":[176],"class_list":["post-71235","beneficiaries","type-beneficiaries","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/fundacjarakiety.pl\/en\/wp-json\/wp\/v2\/beneficiaries\/71235"}],"collection":[{"href":"https:\/\/fundacjarakiety.pl\/en\/wp-json\/wp\/v2\/beneficiaries"}],"about":[{"href":"https:\/\/fundacjarakiety.pl\/en\/wp-json\/wp\/v2\/types\/beneficiaries"}],"author":[{"embeddable":true,"href":"https:\/\/fundacjarakiety.pl\/en\/wp-json\/wp\/v2\/users\/21"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/fundacjarakiety.pl\/en\/wp-json\/wp\/v2\/media\/71236"}],"wp:attachment":[{"href":"https:\/\/fundacjarakiety.pl\/en\/wp-json\/wp\/v2\/media?parent=71235"}],"wp:term":[{"taxonomy":"beneficiary_categories","embeddable":true,"href":"https:\/\/fundacjarakiety.pl\/en\/wp-json\/wp\/v2\/beneficiary_categories?post=71235"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}