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Joasia's mouth is in danger!

Joasia Hrynyszyn
Fundraiser finished
Fundraiser goal:

Skleroterapia z odwróconą elektroporacją

Fundraiser started by: Fundacja KAWAŁEK NIEBA
Joasia Hrynyszyn, 3 years old
Warszawa, mazowieckie
Wrodzona malformacja żylna wargi dolnej i języka
Starts on: 16 October 2020
Ends on: 16 February 2021

Fundraiser description

We would like to ask you for help in gathering funds for treatment of our little daughter Joanna in the German interdisciplinary vascular anomalies centre. Asia was born on 07.11.2019 and was diagnosed with vascular congenital anomaly – vascular malformation located in the area of chin. Firstly, we thought it is nothing serious. In short time, the change became more and more visible. Then it has become visible permanently and it looks like bruising, which, when she cries, remains convex. 

Vascular malformation is a congenital anomaly of blood vessels and it grows with child. It never disappears on its own. When untreated, vascular malformation leads to vein thrombosis with acute pain and it is constantly growing. It may lead to oedema and haemorrhages.  

Joasia Hrynyszyn

Depending on the way it grows, it may impair or impede functions of the neighbouring tissues. In Joasia’s case the most problematic issue may be that the anomaly is also located on her tongue. 

This kind of malformation located in tongue is extremely rare. Improper treatment may lead to damages influencing tongue’s functions. Additionally, previous examination has not shown how extensive the malformation is and whether or not it also affects venous vessels in the neck. The doctors informed us that what we see on her tongue may be only the tip of the iceberg. It can only be confirmed by MRI with contrast, which is planned to be conducted just before the operation and which will show the actual scope of malformation. 

On the Internet I have found only one case with malformation in the tongue area in Poland. 

This case shows that treatment of malformation in this area is extremely difficult and that improper treatment may lead to serious consequences or even mutilation. There is no standard of treatment malformations in this area because it occurs very rarely. The treatment should be carried out in an interdisciplinary clinic, as only such has specialists of various fields of medicine who knows the character of malformations. That is why, depending on the situation, the patient may be offered with the most relevant treatment at every stage of the treatment, and in case of complications the treatment may be altered and adjusted to the circumstances. Unfortunately, there is no such clinic in Poland. 

While looking for help in Poland and abroad, we were referred to the centre in Halle (Germany) to professor Wohlgemuth as an expert in malformations, even in such small children. 

Professor Wohlgemuth recommended sclerotherapy with possible reverse electroporation under general anaesthesia. Reverse electroporation is a procedure intensifying activity of the medicine inside the cell, what brings better effects and reduces the amount of medicine needed to be administered for sclerotherapy. It also provides best chances of reducing the number of necessary procedures. 

The Interdisciplinary Vascular Anomalies Centre in Halle, Germany, is the only one in Europe carrying out sclerotherapy with reverse electroporation. 

We wish to ensure the safest and the least invasive treatment for our daughter. We believe that thanks to experienced specialists in the German clinic in Halle under the direction of professor Wohlgemuth, special equipment and the most cutting-edge methods the clinic uses, we may diminish the risk of complications, what translates into less number of interventions needed. It gives us the chances for maintaining tongue’s functions. 

Joasia Hrynyszyn

Unfortunately, we cannot afford this treatment in Germany for our daughter. One stay for the above-mentioned procedure costs EUR 23,000 with the possible necessity of re-treatment after 3 months from the first procedure, what adds up to the amount of EUR 46,000. The date for the procedure has been set for 25.02.2021. Due to the pandemic, we know today that we have to be in Halle as early as on 17.02.2021.

We hope that with the help of good people we will be able to ensure the relevant treatment to Joasia, what will give her best chances of preserving the tongue’s functions and diminish the risk of mutilation so that she could still have a broad careless grin on her face, as she does today. We are extremely grateful for each and every amount, even the smallest one. Thank you from the bottoms of our hearts. 

Joasia’s Mum – Katarzyna Hrynyszyn with family 



Als wir nach der Geburt unserer Tochter Joanna das Krankenhaus verlassen haben, waren wir überglücklich. Schon damals bemerkten wir, dass bei Joanna eine blaue Stelle an der unteren Lippe und auf der Zunge sichtbar wir, wenn sie weint. Wir dachten jedoch an nichts Ernstes, jedoch wurde diese Veränderung mit der Zeit immer sichtbarer und irgendwann sah man es die ganze Zeit. Da wir keine Zeit verlieren wollten, unternahmen wir entsprechende Schritte, um so bald wie möglich die richtige Diagnose zu bekommen. Es hat sich herausgestellt, dass es sich im Falle unserer Tochter um eine arteriovenöse Malformation am Gesicht (am Kinn und an der Unterlippe) als auch auf der Zunge handelt. Diese angeborene Fehlbildung der Blutgefäße, die zusammen mit dem Kind wächst, wird niemals von alleine verschwinden. Da sich diese Malformation auch auf der Zunge befindet, kann es bei Joanna zu einer Funktionseinschränkung der Zunge kommen, was zugleich eine Einschränkung des Sprechens, Essens oder Schluckens bedeutet.

Die Art der Zungenmalformation bei unserer Tochter kommt sehr selten vor.

Aufgrund von diesem Zungendefekt wird die Behandlung von Joanna unglaublich schwierig und risikoreich sein und eventuelle Behandlungsfehler könnten in der Konsequenz zu gesundheitlichen Einschränkungen und zusätzlicher Behinderung führen. Die Ärzte sagten uns, dass dieser sichtbare Fehler nur der Gipfel eines Eisberges sein könnte! 

Die Fachärzte an der Klinik in Haale in Deutschland haben sich bereit erklärt, unsere Tochter entsprechend zu behandeln. Die empfohlene Therapie ist am wenigsten invasiv und riskant und zugleich sehr aussichtsreich. Sie kann unserer Tochter die lebenswichtigen Funktionen der Zunge bewahren und ihr Leiden sowie das Verletzungsrisiko mindern. Leider sind die Kosten dafür enorm.

Wir sind nicht in der Lage diese hohen Behandlungskosten unserer Tochter zu übernehmen, dabei könnte die lebenswichtige Therapie schon im Februar  2021 beginnen! Wir tun alles, um den nötigen Geldbetrag zu sammeln. Wir können nicht riskieren, dass unser Kind leidet.

Wir hoffen, dass Joanna in der Zukunft fröhlich und unbeschwert lächeln kann, deswegen bitten wir Euch um Hilfe…

Wir sind wir jeden, auch so kleinen Betrag, aus tiefstem Herzen dankbar.

Eltern von Joanna

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