Gajusz Foundation’s big success.
Gajusz Foundation has been operating for already 15 years in Lodz and surrounding areas. It is a non-profit organization, whose aim is to provide a comprehensive care for children with chronic and incurable conditions and their families. They cooperate with the Oncological and Hematological Centre in Lodz and since 2004 they have managed a Home Hospice for Children of Lodz Region. 2nd of October was a big day for the Foundation – opening ceremony of the stationary hospice.
Their activities in the city are not only important, but are also meeting a huge success. We went to have a chat with Tisa Żawrocka, chairman of the Foundation.
In spite of all the challenges, the foundation seems thriving. But the beginnings were not easy, weren’t they?
Yes, the Foundation has been set up 15 years ago. My son, Gajusz, was suffering from a fatal illness and, according to what doctors were claiming, he did not have much time left to live. His bone marrow was not working properly, it did not produce granulocytes. A transplant was the only chance for Gajusz. But other problems appeared, because we did not find a matching donor, and transplant from unrelated people was impossible in those days. This meant practically the end. Moreover, Paulina, a little girl who was hospitalized in the room just in front of Gajusz, was dying. Our story was repeating there just in front of our eyes. That is when the idea of a foundation hit me. I soon became obsessed with the thought: a foundation that could help all these kids and their families. Fortunately, all ended well for Gajusz. His illness gradually receded much to the doctors’ surprise. A miracle? Maybe. However the idea of the foundation did not vanish.
The story of the foundation is deeply intertwined with your personal experience then…
Yes, that is true. After I set up the foundation, I realized that it was becoming harder and harder for me to cope with so many emotions. A lot of children were dying. A lot of them. And I knew them all very well. One day, I had a car accident. It was then that I realized that I was stressed and overburdened. However, instead of giving up to despair, I came up with another idea. And I came up with an idea of a public health center which would hire psychologists paid by public health care system. That was it! Today they assist and help families, mostly parents.
You provide support to families too?
Yes, because helping a child is a complex task. You cannot help without a support for the whole family. In the meantime we found out that there are children with no support from the family. These cases are incidental, but as I said – they exist. What happens now is that these children are moved from one hospital ward to another. They do not know what will happen to them. Sometimes they are being transferred to institutions which have no clue how to act towards them – social care institutions are not adapted to provide special, palliative care. In this very moment, for example, we have similar applications for four children.
This is a lot of work indeed. Do you receive some help from public institutions?
We do. Some time ago, Medical University of Lodz offered us to become a unit of the school and create Pediatric Palliative Care in cooperation with University. As I mentioned before, Gajusz Foundation also cooperates with National Health Fund.
Quite recently, we also started cooperation with the Academy of Fine Arts. One of the professors came with students. They have done a beautiful job for us – transforming this hospice building into a real palace!
Do you mean to turn it into a happy, colourful place that we can see now?
Exactly! We were not aiming to be the second Disneyland nor anything that is kitsch. We had art deco furniture, but we wanted the interior design to hint at secession style. Personally I believe it fits children the most. I was sure it was possible to do exactly as we imagined. And students supervised by professor worked on the front of the building. And the garden too.
Sounds like a fairy tale with a happy ending. Don’t you suffer from any problems as a non-profit organization?
Unfortunately, it is not that shiny. The most significant problem is obviously financing. This does not involve Gajusz Foundation only. This “illness” of the system involves basically the whole non-profit sector in Poland. For example, the National Health Fund gives us 75 PLN/day for a patient, when a patient costs 3 times as much! Summing up all the costs we have 1 mln PLN of deficit per year. The most bitter in this situation is the fact, that all costs should be covered by public medical insurance. But the fact is that we have an access only to a very little part of these funds.
1 mln PLN this is a big sum. How do you cover this budget hole then?
Campaigns. Sponsoring. 1 % of tax. Donations. We try many options. We undertake actions directed to individuals and companies or institutions. We search for donations from private companies, either money or goods. During these 15 years we already gained a group of friends who support us constantly. I can honestly say that without them we would not be able to exist. We also prepare projects. Currently we have a very nice one. This will help us to buy necessary but very expensive medical equipment. But let’s be honest it will not cover the huge black hole coming from everyday expenses. We also carry out campaigns – for which we gained a lot of prizes. And concerts. With concerts though there is a particular problem. There is much more a medial event than a profitable one.
Now we have about one hundred, but we could always make use of more. Especially in the summer when young people have more spare time or older people with less duties. We are always in need of so called auntie-grandmas. Because there are many children who simply like to have somebody around.
And letters. We write letters. To everybody. Even to Angelina Jolie.
Not yet. But we think positively. Maybe at the end somebody will answer.
We were also searching for volunteers to help us in renovating…
The hospice building?
Well yes. But not only. We did not have very high expectations. We all knew that people work for money, but we thought that somebody could just enjoy or experiment with decorating some rooms for free.
Well, yes!! (laughs) Actually we once went to prison and asked for prisoners to help us. They were working here! When the authorities found out what we needed, they made everything ready in three days. We got a team of 8 men. We were very satisfied with their precious help.
What does the foundation do? What are the fields of help?
Psychological help, voluntary work, legal help programme in which we help victims of car accidents and their families. We also manage some funds for ill children. We try to get money from each and every source, just to help children. Because even if they are seriously ill, they always love to play, to live adventures. We have a program called “Everything is possible” Its aim is to make kids dream come true, to prove that a cancer or another fatal disease can be beaten. This has an incredible therapeutic value not only for the child but also for these children who just start the treatment. There is something important about this job. Statistics is just one side of the coin, because seeing even one child surviving and get back to his daily life, playing and learning is something that sends all statistics to the bin.
For example, a little girl who was suffering from leukemia when she was 5. The doctor said that by the age of seven she will be healthy. And the girl? Her dream was to dance. So we signed her in to ballet lessons. She ended up dancing in the theatre. She also played a part in the movie “Mój Rower”.
And another girl who wanted her own medical office. Her chances to survive were oscillating between 0% and 5%. She won the struggle with her illness. Santa Claus sent her a doctor uniform for Christmas. She did not want anything else. Now she has two stethoscopes. Dolls suffer from apnea.
So as you can see, these programmes are possible to realize and they make a lot of good. We have to support children, support their dreams.
You mentioned about Armenia….
Armenia this is my adventure from childhood that ended up a bit dramatically – there was a war, an earthquake. Everybody was escaping. That certainly was not a time to visit this country. But it stayed in my head anyway for all these years. Some years ago, I don’t remember exactly how many, five or seven, I flew there for holidays. I went with friends, but they were flying another plane. And in the plane they met people who also take care of ill children in Armenia. So as you can imagine my private life quickly mixed with my job again. And we decided to go there to realize a project for ill children that are treated at home. We bring meds and currently we are trying to influence lawmakers to change the law regulation the use of stronger meds at home. This is very important, because taking strong painkillers at home is strictly forbidden, which leads to the simple process of illegal trade conducted by mafia. These meds are not expensive. Morphine is cheap and outstandingly effective. But the only way to get these meds for stay-home patients is trading with mafia. We would just like to give people the opportunity to legally buy and use stronger painkillers in situations of fatal illnesses. If Armenia aims to be part of Europe, they have to understand that these changes are crucial.
Is Armenia the only country you’ve been cooperating with?
No, we also worked in Georgia and Moldova. Currently we do not conduct any projects there, but we intensively think of the future. These projects are for people who like to engage themselves. It is a kind of a reward I must say. It is a possibility to see some other world, meet extraordinary people in exchange for a very hard work there on the spot. But it was certainly worth it.
You are quite a globetrotter…
A bit I am. There are “western people” as I call them. They like hotels and pools and there are people like me. We like to wander. Plus these countries, like Armenia, Georgia are really unique. Sometimes when I ask my friends, they don’t remember if they were in Tunisia or Egypt. I don’t have such a problem. This kind of traveling connected to my work is very exciting. And the people… They certainly don’t have a simple life. They know that things are not simple, yet they are open and warm. And they never forget to smile. Armenia was a place where despite the political situation I was not afraid at all. People just want to talk, to get to know more about you, to help. We have friends there. Crazy people. Educated. Revolutionists. Did you know that most of the people there speak three languages?
Do you have pictures?
Hundreds! I met so many interesting people there. Look. This is a grandma. She lives at this demarcation line. Her name is Gajusz. This is a female name there. For me that was touching. And this Karabach… Everywhere I look, it is written not to go there. It is dangerous they write. If something happens the embassy cannot interfere. I disagree. Completely. There is a lot of going on there. Culture is everywhere. And what surprised me a lot, there are children everywhere. In cultural institutions. In opera. They walk, wander and talk. Disturb a bit. But it is ok. My own child was a bit shocked at first.
Look here. Such a beautiful monastery in Noravank. There is this legend. Can you see these rocks all around? They are all red. The legend says that once there was Momik, who was badly in love with a daughter of a duke. Duke claimed to give the daughter to marry him, only when he would build the most beautiful monastery, high in the mountains. Momik did what he was asked for. But the word of a duke was not worth a penny. He sent an assassin who pushed Momik off the rock. That’s why all these rocks around are so red now.
Extraordinary indeed. Just like the job the Foundation does. Thank you for the conversation.