Five years ago she dreamed of eating a pork chop and "being as he althy as a big child". "I will be able to go so far to Aremica and heal myself there," she said. Her dreams could come true thanks to the generosity of the donors. The amount of PLN 6 million collected in record time allowed Zuzia Macheta to go to a clinic in Minnesota for treatment. What's up today with a little warrior and precursor of online fundraising for sick children?

- We already knew about the possibility of therapy in February. I remember that everything happened so fast that it suddenly turned out to be May in March, and we were packing our bags to be able to fly to the United States - that's the fundraiser for our daughter's treatment, recalls Sylwia Macheta.

If someone asked her what her life was like then, she would answer with the proverbial "half-heartedly". On a daily basis, Zuzia with her parents and sister Alicja live in Gogolin.

- Every two days she traveled to Warsaw for meetings and interviews, to talk about our action and her daughter's illness. It was a great chaos, and at the same time it was very lucky that the white collection bar is getting greener and greener. I remember that the moment, when the first million was collected, I just slept from exhaustion and I wanted to see him so much - he says.

Zuzia was 7 years old then. Every day of her life was filled with suffering. The pain she felt at the time could be compared to scalding with boiling water, with the only difference that it never went away.

In the disease the girl is struggling with, i.e.blistering epidermis , as the name suggests, the whole body is covered with blisters, which form one large, non-healing wound. Touching or removing the dressing caused the skin to peel off.

One in 50 thousand people in the world struggle with this disease . Painful blisters appear not only on the skin but also in the esophagus, ears, stomach and even in the eyes. What is the reason for this state of affairs? The patient's skin lacks the "glue" that connects the individual layers of the epidermis, which makes it very easy to destroy it.

"I slept through the first million"

The only hope for Zuzia for a relatively normal life at that time was expensive therapy in a clinic in Minnesota in the United States. It cost over £ 6million zlotys. Zuzia's parents tried to collect as much of her as possible, getting rid of all valuables. It turned out, however, that without people of good will it would be impossible. The internet and a fundraiser on the siepomaga.pl portal came to the rescue.

- We decided to take this step because we had no other choice. Zuzia suffered more and more day by day, and we were helpless. It was at the same time throwing yourself into deep water and the last resort. I perfectly remember that many of our friends were knocking on the head that it was madness, that it would definitely fail. And then? Then there were more fundraisers, for more sick children and for amounts much greater than the amount we needed for Zuzka's treatment - recalls Sylwia Macheta.

The whole family flew to the United States on September 14, 2015. In June 2016, she left a clinic in Minnesota after a transplant and with an arsenal of medications that she had to take three times a day.

- Our day revolved around dosing consecutive doses, connecting drips with nutrition, feeding through a gastric tube, and control visits to the hospital. Somehow we managed to put it all in order and made Zuzia feel as little as possible about the unpleasant sides of what she was going through. We found time to play together, for walks - remembers Sylwia.

"We fought for her several times"

Zuzia's body fought bravely, although it was not without bloodcurdling moments. She was in the ICU for 21 days. The strong chemistry and the sudden release of new cells made her body go crazy literally and figuratively.

- We fought for her several times. She was given a few percent chances, and we watched during several nights that were decisive about her fate - remembers Zuzia's mother.

In a gesture of solidarity with her daughter while taking chemotherapy, she shaved her head. The girl endured the entire stay in the clinic and the subsequent painful and tedious operations and procedures very bravely.

- When we saw that it was hard to take her anymore and asked why she didn't say she had enough, she replied: "I thought it would go away". A springboard from the hospital reality, as her condition improved, was the swing that was located on the premises of the clinic. She tormented and tormented her - recalls Ms Sylwia.

Finally, after a year and a half of treatment, we managed to say goodbye to a hotel room in the States, which became a second home, and return to the real one, in Gogolin. Five years have passed since the collection for Zuzia's treatment. How is her life today?

- Often from someone who does not know the topic and has never been in our situation, I hear the following words: “This therapy is pointless. You drive and you drive to theseStates and there is no improvement in sight. " Such comments make me boil inside me. Someone who has no contact with Zuzia does not see on a daily basis that today it takes only half, not two hours to change her dressings, and that she has already had a dozen times to try her dream pork chop. I will say more, he is still learning new tastes, getting to know them. She can eat normally because her esophagus is not blistering. The skin is stronger and is able to withstand more - says Sylwia.

Zuzia's dream were the hands. Finally, after four years of therapy, it could be fulfilled.

- Thanks to these transplants from Ali, i.e. Zuzia's younger sister, these fingers do not heal. This is another huge step forward, although for those who do not see us on a daily basis, it may be unnoticeable. Yes, we are struggling with the side effects of this disease and therapy, because Zuzia has a problem with the adrenal glands and is not growing, but doctors from the clinic in Minnesota are also working on this. They also need to find the real cause of neuropathic pain, whether it is a problem in the body or in the head. It is also important that for several years Zuzia has not been stuffed with painkillers as she used to be, because this pain is very little or not at all - explains Sylwia.

Diary instead of drawing

What, apart from the pork chop, is on Zuzia's favorite list of dishes? It turns out that the girl is not such a big fan of meat anymore.

- She loves fish and she likes breading the most from pork chops, so I put some more on it. Sometimes she eats crunchy toast or French fries and nothing happens to her throat, it doesn't get overgrown, it doesn't blister, it doesn't bleed because something was too hot or too warm. Once I had to divide her sausage into parts, now I don't have to, because she can chew it alone. Still, as I mentioned, I get to know new flavors, so every now and then we have a festival of pancakes, dumplings or pizza at home - Sylwia laughs.

Although Zuzia has an individual teaching mode, she goes to school and stays with her peers. He is doing very well with science.

- She is gifted, but a bit lazy, although I have to admit that she does not have to put much effort into learning, because she is very good at it. Sometimes she is really tired of visits to doctors, treatments, then we let her go a bit - explains Zuzia's mother.

Zuzia's favorite subjects are English, which is fluent in German and Polish due to frequent visits to the United States.

- Before the surgery, Susan loved to draw and paint. Since he has had his hands, this talent has been put aside. I'm writing nowdiary and tries his hand at various literary forms. Besides, she is very curious about the world. She is interested in animals, has her own plans, what she would like to see, such as a wolf sanctuary. These are now her beloved animals - says Sylwia.

When someone asks Zuzia who she would like to be, she replies that she is a doctor or a veterinarian. In addition to choosing her future professional path, the girl's head is also concerned with other teenage problems.

- Like all children, our Zuzka is also maturing. On the wallpaper, as the saying goes and how it is at this age, there is a theme of boys. Our daughter has a friend. This is a boy who lives in the United States and is deaf. They can't really talk to each other, but they text on instant messaging all the time. He sometimes laughs, because when their "date" is about to take place, Zuzka will get impatient and each one, for example, can quickly put on a nice blouse - says Sylwia.

"Someone was surprised that a 10-year-old is playing with dolls"

Zuzia knows that she is sick, that she is a bit different from other children, but she does not ask why this disease happened to her.

- She wants to be like her peers. He tries very hard for it. She does not compare herself with her younger sister Ala and often repeats herself that her disease is not anyone's fault and explains that her body simply lacks collagen - says Zuzia's mother.

She admits that such a good mental condition in her daughter would not be possible if it were not for the work of psychologists.

- It was they who, using this innate optimism, made her endure both the time of healing and returning to reality so well. The fact that you do not encounter any form of hatred by your peers is also due to the teachers at school, who were able to explain to the children why it is so and not otherwise - says Sylwia.

She laughs that her daughter has learned the difficult art of negotiation.

- He puts his way very strongly. He can press against the wall so that sometimes we have no choice. But these are mostly things like an extra walk or other pleasure. We are agreeing to that. During this time, after our stay in the United States, we tried to make up for her lost childhood. Someone was surprised that a 10-year-old was playing with dolls, because she was really focused on it for several months, and I asked when she was supposed to do it, since she was still lying in the hospital bed? Today she does not play with them anymore, she has other interests - says Sylwia.

Apart from some pleasures, Zuzia does not have any discount. Her parents follow the same rules as their younger daughter.

- WThe United States tried to convince us a bit and wanted us to treat her the way children are treated in America, which is to give her a choice in all matters. We did not agree to it because she did not want to cooperate with doctors. It was not a good path for her - he says.

Quarrels and sisterly love

Does Zuzia have any flaws? - I have the impression that he lives too much with templates, that he plans everything too much. Lying in bed, she plans what she will eat for breakfast, lives within a strictly defined schedule - dressings, lessons, pleasures. When something changes a little for us, we are unable to control it. Her younger sister, on the contrary, lives on the so-called spontaneously. Sometimes I have the impression that the girls complement each other with this contrast - notes Sylwia.

Zuzia's younger sister, or Alicja, is not only a companion for playing together, but also for quarrels, because those between girls, as between teenagers, often take place, but also a person without whom treatment could not be successful. It was she who donated skin, bone marrow and stem cells for transplant for her sick sister.

- Alicja went through an accelerated maturation process. She was and still is open to this help. He does not complain, he does not complain. There was a moment when she was very afraid of it, and although the entire process of collecting these skin fragments may be compared to rubbing the knee, it is still not the most pleasant. Ala is protected by doctors with appropriate drugs each time, silenced, anesthetized so that she can undergo this process as comfortably as possible. Each time she goes through a conversation where only she and the medical team are present. Nobody influences her decision, and when asked if she is ready for it, she replies that she is, because she wants to help her sister. For me, this is the greatest gesture and expression of sisterly love. Sometimes I don't have enough words to describe it - says Sylwia.

She reveals that Ala is rewarded with her favorite dessert, i.e. ice cream, each time after the treatment. He also admits that although the situation makes the family's attention largely focused on Zuzia, Ala can always count on her time with her mother.

- I try to share it evenly between my two daughters. We have established rules that, for example, I go with Ala for a two-hour walk, and when I come back I have time for Zuzia, alone. I know they both need mom and don't really want to share her. However, it also happens that the three of us, especially recently, sit until the night and talk about various important matters - says Sylwia.

A million needed for a plane

Even though the transplant has been successful, there is still a long way to go. When she is 18, Zuzia has to do it oncea year to fly to the clinic, where the next necessary procedures are performed and the diagnosis of treatment progress is carried out. She is waiting for, among others another skin transplant, removal of a hernia, urinary tract surgery, or sewing a hole left by the old PEG.

- There is also the issue of starting therapy and determining medications so that we can continue treatment in Poland and, as I mentioned, Zuzia could grow - says Sylwia.

The coronavirus outbreak has frustrated these plans. - We should be in the States as soon as possible, but we cannot fly there by regular scheduled plane or charter, because it is too dangerous for our children under the current conditions. This is also the contract with the clinic. It must be a medical flight with the appropriate equipment and personnel on board. Unfortunately, it costs money - explains Ms Sylwia.

That's why she joined forces with the mother of Kajtek, a boy who, like Zuzia, suffers from blistering epidermal separation.

- I must have knocked on every door, but I didn't manage to get anything done. That is why we organized a joint fundraiser at siepomaga.pl. We have postponed the funds for treatment, but we cannot afford the plane anymore - he says.

The cost of a return flight for both of them is over a million zlotys. Although some of this amount has already been collected, the money is still lacking. The collection lasts until July 4. Ms Sylwia hopes that the bar on siepomaga.pl will be filled with green once again and that both Zuzia and Kajtek will be able to fly to save their he alth again.

When asked how she lives today, she replies that she takes small steps.

- I have small goals. It is easier for me to achieve something this way. Now the goal is for Zuzia to grow, for her body to enter this period of puberty with the least complications. I would like her to continue to be educated, to be as independent as possible. When she was born, she thought about how she would live, what her social life would be like, whether she would still feel rejected. Today I know that I cannot protect her forever, yes, I can help her and I will still do it, but she must be more and more independent. She has to learn that it will not always be nice and colorful, and even when she hears some unpleasant words, she should know how to deal with it and how not to worry about it - says Sylwia.

She laughs that although she has many more duties than before the therapy in the States, because she is not only Zuzia's mother, but also a personal nurse and driver who takes her to school, she enjoys this workload.

- Therapy, trips, it was a difficult time, but if I had to do it again, I wouldn't hesitate for a moment. I fought and stillI will fight for her he alth, for these small steps - she says.

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