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- Cuba is struggling with Nijmegen Syndrome and T-cell lymphoblastic lymphoma
Cuba is struggling with Nijmegen Syndrome and T-cell lymphoblastic lymphoma
Highlights
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Purpose of the collectionThe cost of ongoing treatment, travel to the clinic, specialized supplementation, hygiene products and high-quality cosmetics to alleviate the effects of chemotherapy.
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DiagnosisT-cell lymphoblastic lymphoma
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Age of the Ward12 years
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Location
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Collection always at hand
Highlights
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Purpose of the collectionThe cost of ongoing treatment, travel to the clinic, specialized supplementation, hygiene products and high-quality cosmetics to alleviate the effects of chemotherapy.
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DiagnosisT-cell lymphoblastic lymphoma
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Age12 years
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Location
Update
Kuba is still battling complications from the transplant❗. Kuba is now post-transplant and is currently staying at home. However, he is still struggling - he has developed a skin graft, against which he is taking measures at home. He is taking cyclosporine, which prevents graft rejection. Our Warrior also has to take proper care of his skin. Unfortunately, steroid ointments are not reimbursed. Recently, the boy began experiencing abdominal pain. Consultations with doctors are ongoing, as there has been concern about the formation of an intestinal graft. Cuba also faces ingrown toenails, through which inflammation persists. There are many indications that these are the effects of chemotherapy. Currently, Kuba is trying to get back to daily life - unhindered if possible. The family is also trying to get the bathroom and toilet renovated so that our Warrior can use it more efficiently. We encourage you to continue your support! October 8, 2024 Kuba has undergone a bone marrow transplant and is facing more complications❗. At the end of May, on May 31, 2024 to be exact, Kuba underwent a bone marrow transplant. Unfortunately, it was not without serious complications. Our Warrior contracted staphylococcus, which resulted in a blood infection. Immediate removal of the Broviac was necessary. In addition, Kuba contracted pneumonia, which turned out to be so serious that his respiratory capacity declined very quickly. He was considered for transfer to the intensive care unit. He spent about a week and a half "under oxygen," and there was also conductive syndrome. It took a lot of time to reduce the excess water created by the medication. Kuba is a true Warrior, he coped and recovered, although he is still very weak. However, this does not make him stop smiling! This is still not the end of his fight for health and return to normalcy. After his hospital stay is over, our Hero will need intensive rehabilitation and care. The boy's parents are very much asking for support and are grateful for any help! June 28, 2024
Explore the history of
Let's give the floor to his mother, who can best describe what her son faced:
"Kuba was born 10 years ago with the diagnosis: Nijmegen Syndrome - NBS. It is a genetic defect. It manifests itself with microcephaly and congenital immunodeficiency.
Due to the gene mutation, more than 40% of patients develop malignancies. In addition to the conditions associated with the defect, Kubuś is a boy with moderate intellectual disabilities. Despite all adversities, he is a happy boy, like any 10-year-old who enjoys computer games and playing with his peers, especially his cousins and his dog.
We are under the constant care of the Children's Health Center in Warsaw. Unfortunately, in November a seed of uncertainty was planted in us that we thought we would never hear about. During a routine check-up, Kuba was noticed to have enlarged lymph nodes in the ear and collarbone area. After that, everything went very quickly.
We ended up at the "Cape of Hope" in Wroclaw for a more in-depth diagnosis. Unfortunately, the worst-case scenarios were confirmed.
Cuba contracted T-cell lymphoblastic lymphoma. We always hoped it would never happen. In a few days we had to reevaluate our lives. The long road of fighting for Kuba's health has begun in front of us, which, unfortunately, is occupied by financial problems.
Living on two houses, commuting to the clinic, specialized supplementation, hygiene products and high-quality cosmetics to mitigate the effects of chemotherapy require additional financial outlay. Currently, my husband is the only person supporting our family.
I have never liked to ask people for help, because we have always managed despite adversity. Unfortunately, this time it is very difficult, and I ask people of good will to help us get through this uncertain time for us. Every zloty will help improve Kubus' comfort in staying in this not necessarily cool place.
In addition, I encourage everyone who has the opportunity to do so to register with a bone marrow donor bank. YOU CAN SAVE SOMEONE'S LIFE. Who knows, maybe even our Kubusi.
Thank you from the bottom of my heart for your help.
Kubusia's mom - Kasia."
The liver has started to work less well, but the doctors are doing what they can and repairing what the chemo has devastated. The 33rd day of intensive treatment in the clinic has passed, and as a result, it's time to check whether the lymph nodes have "repaired", because let's not forget - Cuba has T-lymphoblastic lymphoma.
And here we can report optimistic news! The boy's body responded very nicely to chemotherapy, which caused the nodes to return to normal. There is one left - the largest one under the waist, but the attending doctor said that it is not so dangerous.
Currently, now Kuba and his mother are waiting for better results to "bounce back" a little after the first cycle and move on with the second. And then the boy is waiting "only" or "as far as" transplantation. Please support this brave Warrior!
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Donate 1,5% tax
Your e-PIT is the easiest way to settle your taxes. The IRS pre-fills your tax returns, and you can verify, approve or correct them.
- Step 1 - log in to the e-Tax Office and use the e-PIT service.
- Step 2 - in the PIT return form, click on Select an organization.
- Step 3 - in the list of organizations, search for Cancer Fighters Foundation or enter the KRS number 0000581036.
- Step 4 - in the field with the specific goal of 1.5%, indicate the Ward by entering the following data:
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KRS No.0000581036
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Specific objectiveJakub Wyglądacz
Contributions and words of support
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Donate 1.5% of your tax
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