Henio, Heniek, Bombur, Dyzio, Huncwotek.

We love this boy and everything about him so much! He was born in 2023 as the long-awaited younger brother of Adam and Marta. He brings so much joy to our lives every day – he is a determined little guy, full of energy, fun ideas and good humor, a truly great friend.

During the long weekend in May 2025, we noticed swelling in Henio’s temples and one eyelid. Apart from that, he was full of energy as usual, and we patiently waited for his scheduled eye examination. After a few days, he developed fever and we went straight to the hospital. The tests revealed acute myeloid leukemia (AML M5) with extramedullary localization in the temple, eye socket and kidney area. It’s an aggressive disease that likes to hide and progresses very quickly.

The beginning was very difficult – mornings on an empty stomach while we waited for procedures under general anesthesia, day after day. The first chemotherapy was administered quickly, which saved Henio’s life. We went through gastrointestinal mucosa damage, parenteral nutrition, pneumonia, and Airvo breathing support. There were shock symptoms, a suspected allergy to one of the chemotherapy components, and only then the treatment was finally resumed.

Life turned into a constant spin, a swing between hospital rooms and uncertainty – our everyday reality. Five rounds of chemotherapy, five months spent in the hospital, with only two days at home in between. Henio was brave, enduring his treatment with good humor, and when he could, he played and had fun. On the worst days, he was too weak to even smile. We made it through this time thanks to the support of our family and friends.

We left the hospital with optimism, believing that Henio would be able to start kindergarten in six months, in the spring. We followed Henio’s special diet and avoided crowds, as advised. We managed to spend Christmas at home. This year’s snowy winter seemed to have arrived especially for Henio so that he could enjoy sledding and crunching the ice under his snow boots. Monthly check-ups showed no abnormalities in his blood tests, and Henio, as usual, was full of good humor and very active. However, we became concerned when he started tossing and turning at night and had trouble sleeping. An abdominal ultrasound revealed changes in one kidney – a recurrence. Since then, we have been back in the hospital and Henio is undergoing another round of chemotherapy according to the recurrence treatment protocol.

This time, after chemotherapy, a bone marrow transplant will be necessary – Henio’s only chance for survival. We are now searching for an unrelated donor in the international bone marrow registry.

How to help?

Bone marrow registry

You can help in a simple, free and painless way – by registering as a bone marrow donor.

Go to https://www.dkms.org.uk/register-now. Navigate the main DKMS website to find the page for your country of residence. After completing the form, you will receive a cheek swab collection kit by post.

If DKMS doesn’t operate in your country, check with your national health authority to find out how to register as a bone marrow donor.

For more information visit:

DKMS Foundation: https://www.dkms.org.uk/donation-explained

Attached is a campaign poster encouraging people to register as potential bone marrow donors. The following link contains higher resolution files in A3 or A4 format:

https://uratujhenia.pl/downloads/

Help to fund Henry’s treatment

In order to increase chances of Henry’s survival we started a founding campaign to raise money for a rare drug - revumenib. It is a new generation medicine designed to work in a very specific scenario - Acute Myeloid Leukemia with KMT2A gene fusion that is present in Henry’s disease. Fortunately, the drug is registered since late 2025, unfortunately, it is not available in Europe yet… and so the treatment is not reimbursed and costs around 250 000 PLN (ca 60 000 EUR) per month. According to doctors, he will need at least 9 months of therapy. If you want to help us raise the funds, please do it via

https://www.siepomaga.pl/henio-ostaszewski

or pay directly on charity account:

Recipient:
Fundacja Siepomaga
Pl. Władysława Andersa 3 
61-894 Poznań

IBAN: 
PL84249010283587100000940817
BIC/SWIFT: 
ALBPPLPW

Title
Donation for Henio Ostaszewski

We would be grateful if you could share this with as many people as possible. You can hang posters in visible places, share it, and, above all, talk to your family and friends about how this small gesture can save someone’s life.

Thank you from the bottom of our hearts,

Henio’s family